Confidence and Legitimacy in Health Information and Communication (Health Engineering and Society: Health Information, 1) 9781786303523, 1786303523

Table of contents :
Cover
Half-Title Page
Title Page
Copyright Page
Contents
Preface
Introduction
References
1. Information Sources on Childhood Immunization
1.1. Introduction
1.2. Methodology
1.3. Vaccination: a proven trust
1.3.1. Loss of trust in the vaccination act
1.3.2. The vaccination obligation
1.4. Health and legitimacy information retrieval: an ambivalent stance
1.4.1. Health information research practices
1.4.2. Criteria for the legitimacy of online medical information
1.5. Parents’ knowledge of vaccination
1.5.1. Lack of knowledge and limited use of the available information
1.5.2. Few parents seek information on vaccination
1.6. The opinion of the health professional: a forced trust?
1.6.1. A discourse that can change the perception of the vaccination act
1.6.2. Maintained trust for health professionals
1.7. Conclusion
1.8. References
2. Web 2.0, Parenting and Informational Habitus
2.1. Vaccine hesitancy: a manifestation of parental approach
2.2. Methodology
2.3. Results
2.3.1. Diversified information practices
2.3.2. The Internet and the importance of choice
2.3.3. Mechanisms for determining information credibility
2.4. Information reflexivity
2.5. Conclusion
2.6. References
3. Trust, Information Sources and the Impact on Decision-Making: The Example of Vaccination
3.1. Introduction
3.2. Vaccination: a complex decision influenced by trust
3.3. Vaccine hesitancy and trust toward information
3.3.1. Quebec parents’ trust in the information provided about their children’s vaccination
3.4. Media, information and vaccine hesitancy
3.4.1. Media and media controversies surrounding vaccination
3.4.2. Media controversy surrounding human papillomavirus vaccination in Quebec
3.4.3. Vaccination information research: impact on vaccine decision-making
3.5. Challenges and issues of public health communication to increase vaccine coverage
3.6. Conclusion
3.7. References
4. Info-Communication Practices of Autistic Children’s Parents on the Internet: Trust Issues and Legitimacy
4.1. Introduction
4.2. Search for health information on the Internet: questioning the medical authority?
4.3. Trust and legitimacy: at the heart of the patient’s “actorization”
4.4. The trust crisis concerning autism
4.5. Methodological elements
4.6. Sample presentation and statistical limits
4.7. The trust crisis in autism: empirical evidence
4.8. Habits in information retrieval on autism
4.9. Parents’ motivations to go on the Internet and compensation research because of a lack of medical info-communication
4.10. Conclusion: overview and perspectives
4.11. References
5. Trust and Information Behavior of French Air Force Flight Nurses
5.1. Introduction
5.2. Information behavior and situation awareness
5.3. Group of actors and study methodology
5.4. Analysis of the empirical study’s results
5.4.1. Building trusting relationships
5.4.2. Trust and roles/structure as information sources
5.4.3. Trust and communication
5.4.4. Trust and skills/knowledge/experience
5.4.5. Trust and control
5.5. Discussion and conclusion
5.6. References
6. Online Info-Communication Practices in the Face of a Crisis of Trust in Breast Cancer Prevention
6.1. Introduction
6.2. Breast cancer prevention: a strategic uncertainty?
6.2.1. Public health communication: toward a culture of prevention?
6.2.2. Breast cancer preventions in question: measures and actors
6.3. Online info-communication practices of the population concerned by breast cancer prevention
6.3.1. Methodological choices for the analysis of an online exchange area
6.3.2. Two trust measures: between judgment and promises
6.4. Discussion and conclusion
6.5. References
7. Trust between Constraints and Limitations of Information Behaviors Among Public Health Policy Actors: The Case of Music Therapy
7.1. Introduction
7.2. Context of emergence of the question of trust: the case of music therapy
7.3. Research field
7.4. Devices to observe
7.5. Methodology
7.6. Trust apprehended through the digital document
7.7. Trust apprehended via institutional sites
7.8. Trust apprehended through digital devices
7.9. Conclusion
7.10. Annex
7.10.1. Parliamentary documents
7.10.2. Documents distributed by the HAS
7.10.3. Attribution documents created using screenshots from institutional website pages via the following links
7.11. References
8. Hospital Trust and Legitimacy: Internal Medicine in the French Health Care System
8.1. Introduction
8.2. The interface-actor as a transversal integrator
8.2.1. Presentation of the interface-actor
8.2.2. Interface-actor missions
8.3. Internal medicine at the interface of hospital services
8.3.1. Internal medicine and the role of the internist
8.3.2. Readability and notoriety of internal medicine
8.3.3. Evolution of internal medicine
8.4. Conclusion
8.5. References
9. From Health Actors’ Information Communication Issues in the Workplace to Obstacles when Establishing a Relationship of Trust
9.1. Introduction
9.2. Building the company’s legitimacy in occupational health safety
9.2.1. The employer’s obligations
9.2.2. Biopolitical perspective and company’s legitimacy
9.2.3. Health actors: health information and communication producers within the company
9.3. Info-communication issues of health actors within the company
9.3.1. Between distance and alignment regarding institutional communication
9.3.2. The lack of visibility and burden of health actors
9.4. The company and its communication policies: obstacles to establishing a relationship of trust
9.4.1. Primacy of control logic and employee concealment strategies
9.4.2. The difficulty of talking for employees
9.5. Conclusion
9.6. References
10. Connected Health: Between Common Aspirations and Specific Interests
10.1. Introduction: connected health, a notion in search of a referent
10.2. Multiple paths of a historical disempowerment of health
10.3. New economic configurations of connected health
10.4. Conclusion: trust, an ever-new challenge
10.5. References
Data sources
11. Expressions of Trust in the Home-Based Care Relationship and Areas of Legitimacy in the Context of Digital Media
11.1. Introduction
11.2. Care: a relationship between actors
11.2.1. Structure of treatment: logics forged concerning epistemological foundations between cure and care
11.2.2. Interactional dimensions and functions of the care relationship
11.3. Dynamic of building trust in the home-based care relationship
11.3.1. Trust in the doctor-patient relationship: a notion rooted in privacy
11.3.2. Trust in the caregiver-patient relationship: a pattern shaped by esteem
11.3.3. Trust in the helping-patient relationship: a domestic commitment of proximity
11.4. Digital mediatization of the relationship based on the care device
11.4.1. Singularity of media coverage of the relationship with ICT
11.4.2. Singularity of media coverage of care with ICT
11.4.3. Trust climate in the context of digital media
11.5. Forecast and conclusion
11.6. References
12. The Electronic Medical Record: Standardization Issues and Personalization of Information for Health Professionals
12.1. Introduction to EMRs
12.2. Literature review
12.3. Exploratory empirical study
12.3.1. Study context
12.3.2. Methodology
12.4. Discussion and conclusion
12.5. References
Postface
List of Authors
Index
Other titles from iSTE in Health Engineering and Society
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Citation preview

Confidence and Legitimacy in Health Information and Communication

Health Information Set coordinated by Céline Paganelli and Viviane Clavier

Volume 1

Confidence and Legitimacy in Health Information and Communication

Edited by

Céline Paganelli

First published 2018 in Great Britain and the United States by ISTE Ltd and John Wiley & Sons, Inc.

Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms and licenses issued by the CLA. Enquiries concerning reproduction outside these terms should be sent to the publishers at the undermentioned address: ISTE Ltd 27-37 St George’s Road London SW19 4EU UK

John Wiley & Sons, Inc. 111 River Street Hoboken, NJ 07030 USA

www.iste.co.uk

www.wiley.com

© ISTE Ltd 2018 The rights of Céline Paganelli to be identified as the author of this work have been asserted by her in accordance with the Copyright, Designs and Patents Act 1988. Library of Congress Control Number: 2018949573 British Library Cataloguing-in-Publication Data A CIP record for this book is available from the British Library ISBN 978-1-78630-352-3

Contents

Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

xi

Céline PAGANELLI

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

xiii

Céline PAGANELLI

Chapter 1. Information Sources on Childhood Immunization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1

Mylène COSTES

1.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2. Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.3. Vaccination: a proven trust. . . . . . . . . . . . . . . . . . . . . . . . . 1.3.1. Loss of trust in the vaccination act . . . . . . . . . . . . . . . . . . 1.3.2. The vaccination obligation . . . . . . . . . . . . . . . . . . . . . . 1.4. Health and legitimacy information retrieval: an ambivalent stance . 1.4.1. Health information research practices . . . . . . . . . . . . . . . . 1.4.2. Criteria for the legitimacy of online medical information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.5. Parents’ knowledge of vaccination . . . . . . . . . . . . . . . . . . . . 1.5.1. Lack of knowledge and limited use of the available information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.5.2. Few parents seek information on vaccination . . . . . . . . . . . 1.6. The opinion of the health professional: a forced trust? . . . . . . . 1.6.1. A discourse that can change the perception of the vaccination act . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.6.2. Maintained trust for health professionals . . . . . . . . . . . . . . 1.7. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.8. References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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vi

Confidence and Legitimacy in Health Information and Communication

Chapter 2. Web 2.0, Parenting and Informational Habitus . . . . . . .

21

Maryline VIVION

2.1. Vaccine hesitancy: a manifestation of parental approach . 2.2. Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3. Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3.1. Diversified information practices . . . . . . . . . . . . 2.3.2. The Internet and the importance of choice . . . . . . . 2.3.3. Mechanisms for determining information credibility . 2.4. Information reflexivity . . . . . . . . . . . . . . . . . . . . . 2.5. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6. References . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Chapter 3. Trust, Information Sources and the Impact on Decision-Making: The Example of Vaccination . . . . . . . . . . . .

43

Ève DUBÉ and Dominique GAGNON

3.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2. Vaccination: a complex decision influenced by trust . . 3.3. Vaccine hesitancy and trust toward information . . . . . 3.3.1. Quebec parents’ trust in the information provided about their children’s vaccination . . . . . . . . . . . . . . . 3.4. Media, information and vaccine hesitancy . . . . . . . . 3.4.1. Media and media controversies surrounding vaccination . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4.2. Media controversy surrounding human papillomavirus vaccination in Quebec . . . . . . . . . . . . 3.4.3. Vaccination information research: impact on vaccine decision-making . . . . . . . . . . . . . . . . . . . . 3.5. Challenges and issues of public health communication to increase vaccine coverage . . . . . . . . . . . . . . . . . . . 3.6. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.7. References . . . . . . . . . . . . . . . . . . . . . . . . . . .

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52 54 55

Chapter 4. Info-Communication Practices of Autistic Children’s Parents on the Internet: Trust Issues and Legitimacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

67

Clément DUSSARPS and Denis DUSSARPS

4.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2. Search for health information on the Internet: questioning the medical authority? . . . . . . . . . . . . . . . . . . . . . . . . 4.3. Trust and legitimacy: at the heart of the patient’s “actorization” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

67 68 70

Contents

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80 83 84

Chapter 5. Trust and Information Behavior of French Air Force Flight Nurses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

87

4.4. The trust crisis concerning autism . . . . . . . . . . . . . . . . 4.5. Methodological elements . . . . . . . . . . . . . . . . . . . . . . 4.6. Sample presentation and statistical limits . . . . . . . . . . . . 4.7. The trust crisis in autism: empirical evidence . . . . . . . . . . 4.8. Habits in information retrieval on autism . . . . . . . . . . . . 4.9. Parents’ motivations to go on the Internet and compensation research because of a lack of medical info-communication . . . . 4.10. Conclusion: overview and perspectives . . . . . . . . . . . . 4.11. References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Anna LEZON RIVIÈRE and Madjid IHADJADENE

5.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . 5.2. Information behavior and situation awareness . . . . 5.3. Group of actors and study methodology . . . . . . . . 5.4. Analysis of the empirical study’s results . . . . . . . . 5.4.1. Building trusting relationships . . . . . . . . . . . 5.4.2. Trust and roles/structure as information sources. 5.4.3. Trust and communication . . . . . . . . . . . . . . 5.4.4. Trust and skills/knowledge/experience . . . . . . 5.4.5. Trust and control . . . . . . . . . . . . . . . . . . . 5.5. Discussion and conclusion . . . . . . . . . . . . . . . . 5.6. References . . . . . . . . . . . . . . . . . . . . . . . . .

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87 88 92 93 93 95 96 98 100 100 103

Chapter 6. Online Info-Communication Practices in the Face of a Crisis of Trust in Breast Cancer Prevention . . . . . . . . . .

107

Pierre MIGNOT and Dorsaf OMRANE

6.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2. Breast cancer prevention: a strategic uncertainty? . . . . 6.2.1. Public health communication: toward a culture of prevention? . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2.2. Breast cancer preventions in question: measures and actors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.3. Online info-communication practices of the population concerned by breast cancer prevention . . . . . . . . . . . . . . 6.3.1. Methodological choices for the analysis of an online exchange area . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.3.2. Two trust measures: between judgment and promises 6.4. Discussion and conclusion . . . . . . . . . . . . . . . . . . . 6.5. References . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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viii

Confidence and Legitimacy in Health Information and Communication

Chapter 7. Trust between Constraints and Limitations of Information Behaviors Among Public Health Policy Actors: The Case of Music Therapy . . . . . . . . . . . . . . . . . . . . . .

135

Nathalie VERDIER

7.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2. Context of emergence of the question of trust: the case of music therapy. . . . . . . . . . . . . . . . . . . . . . . . . . . 7.3. Research field . . . . . . . . . . . . . . . . . . . . . . . . . 7.4. Devices to observe. . . . . . . . . . . . . . . . . . . . . . . 7.5. Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . 7.6. Trust apprehended through the digital document . . . . . 7.7. Trust apprehended via institutional sites . . . . . . . . . . 7.8. Trust apprehended through digital devices . . . . . . . . 7.9. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.10. Annex . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.10.1. Parliamentary documents . . . . . . . . . . . . . . . 7.10.2. Documents distributed by the HAS . . . . . . . . . 7.10.3. Attribution documents created using screenshots from institutional website pages via the following links . . 7.11. References . . . . . . . . . . . . . . . . . . . . . . . . . . .

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135

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136 138 140 141 142 147 148 152 153 153 153

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154 154

Chapter 8. Hospital Trust and Legitimacy: Internal Medicine in the French Health Care System . . . . . . . . . . . . . . . . .

159

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Paméla BAILLETTE and Michel MANNARINI

8.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . 8.2. The interface-actor as a transversal integrator . . . . . 8.2.1. Presentation of the interface-actor . . . . . . . . . . 8.2.2. Interface-actor missions . . . . . . . . . . . . . . . . 8.3. Internal medicine at the interface of hospital services . 8.3.1. Internal medicine and the role of the internist . . . 8.3.2. Readability and notoriety of internal medicine . . 8.3.3. Evolution of internal medicine . . . . . . . . . . . . 8.4. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . 8.5. References . . . . . . . . . . . . . . . . . . . . . . . . . .

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159 160 160 162 165 165 168 171 172 173

Contents

Chapter 9. From Health Actors’ Information-Communication Issues in the Workplace to Obstacles when Establishing a Relationship of Trust . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

ix

177

Aurélia DUMAS

9.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.2. Building the company’s legitimacy in occupational health safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.2.1. The employer’s obligations . . . . . . . . . . . . . . . . . 9.2.2. Biopolitical perspective and company’s legitimacy . . . 9.2.3. Health actors: health information and communication producers within the company . . . . . . . . . . . . . . . . . . . 9.3. Info-communication issues of health actors within the company . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.3.1. Between distance and alignment regarding institutional communication . . . . . . . . . . . . . . . . . . . . 9.3.2. The lack of visibility and burden of health actors . . . . 9.4. The company and its communication policies: obstacles to establishing a relationship of trust. . . . . . . . . . . . . . . . . 9.4.1. Primacy of control logic and employee concealment strategies . . . . . . . . . . . . . . . . . . . . . . . . 9.4.2. The difficulty of talking for employees . . . . . . . . . . 9.5. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.6. References . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Chapter 10. Connected Health: Between Common Aspirations and Specific Interests . . . . . . . . . . . . . . . . . . . . . . .

195

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Adrian STAII

10.1. Introduction: connected health, a notion in search of a referent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.2. Multiple paths of a historical disempowerment of health 10.3. New economic configurations of connected health . . . . 10.4. Conclusion: trust, an ever-new challenge . . . . . . . . . 10.5. References . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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195 198 202 214 218

Chapter 11. Expressions of Trust in the Home-Based Care Relationship and Areas of Legitimacy in the Context of Digital Media . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

223

Géraldine GOULINET-FITÉ and Didier PAQUELIN

11.1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.2. Care: a relationship between actors . . . . . . . . . . . . . . . . . . . . .

223 224

x

Confidence and Legitimacy in Health Information and Communication

11.2.1. Structure of treatment: logics forged concerning epistemological foundations between cure and care . . . . . 11.2.2. Interactional dimensions and functions of the care relationship . . . . . . . . . . . . . . . . . . . . . . . . . . 11.3. Dynamic of building trust in the home-based care relationship . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.3.1. Trust in the doctor-patient relationship: a notion rooted in privacy . . . . . . . . . . . . . . . . . . . . . . . . . . 11.3.2. Trust in the caregiver-patient relationship: a pattern shaped by esteem . . . . . . . . . . . . . . . . . . . . . . . . . . 11.3.3. Trust in the helping-patient relationship: a domestic commitment of proximity . . . . . . . . . . . . . . . . . . . . . 11.4. Digital mediatization of the relationship based on the care device . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.4.1. Singularity of media coverage of the relationship with ICT . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.4.2. Singularity of media coverage of care with ICT . . . 11.4.3. Trust climate in the context of digital media . . . . . 11.5. Forecast and conclusion . . . . . . . . . . . . . . . . . . . . 11.6. References . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Postface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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List of Authors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Preface

This is the first book of a series entitled “Health-Information Seeking” coordinated by Céline Paganelli and Viviane Clavier. This series is part of the collection “Health Engineering and Society” proposed by Bruno Salgues. Each book in the series deals with a specific editorial project designed in close collaboration with the directors of the books. In this book, we propose questioning the notions of trust and legitimacy in information communication in the field of health. It is the result of a call for contributions. The chapters of this book are subjected to a double-blind evaluation of the contributions, first in a summative form and then in full chapter form. Céline Paganelli warmly thanks the following members of the scientific committee: – Viviane Clavier, MCF HDR in Information and Communication Sciences, Grenoble Alpes University, Gresec; – Viviane Couzinet, professor of Information and Communication Sciences, Paul Sabatier University, Lerass; – Mabrouka El Hachani, MCF in Information and Communication Sciences, Lyon-3 University, Elico; – Joëlle Kivits, MCF, Nancy School of Public Health, Lorraine University;

Preface written by Céline PAGANELLI.

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– Marc Lemire, Ph.D. Institutional Researcher at the Institut national de santé publique du Québec (INSPQ), School of Public Health, University of Montreal; – Joseph Lévy, Professor, University of Quebec in Montreal; – Dominique Maurel, Associate Professor, EBSI, Montreal; – Céline Paganelli, MCF HDR in Information and Communication Sciences, Paul-Valéry Montpellier 3 University, Lerass-Ceric; – Isabelle Pailliart, professor of Information and Communication Sciences, Grenoble Alpes University, Gresec; – Bruno Salgues, Director of studies, Institut Mines-Telecom, Paris; – Anne-Lise Touboul, MCF in Information and Communication Sciences, Lyon-2 University, Elico; – Lise Verlaet, MCF in Information and Communication Sciences, Paul-Valéry Montpellier 3 University, Lerass-Ceric.

Introduction

The question of trust is crucial in the field of health because health is indicative of particularly strong issues, be it societal, regulatory, institutional or individual as well as because the boundaries between specialized information validated by legitimate bodies such as institutions or professionals of the sector and information that has not been validated have become permeable. The final reason is that trust appears to be central within relationships between actors in the field, whether they are professionals, patients, public authorities, companies or health organizations. The issue of trust is most often dealt with from the viewpoint of the relationship between patients and health professionals or between users and their health system [JAU 03, SAO 09]. In this book, we propose a method of addressing trust in terms of information and communication phenomena that are at work in the health sector and consider the process of building the legitimacy of information in the health sector. The forms of production, editorialization and mediation of specialized information in the field of medicine have undergone a large number of changes in recent years, particularly under the influence of information and communication technologies. These developments have affected the health information sector, considered here as information for the general public, especially through the development of discussion forums and websites for generalists and most often from private players. Specialized medical

Introduction written by Céline PAGANELLI.

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information, which is part of the field of professional information and intended for industry players (especially health professionals), has also undergone profound changes. Traditionally produced by the public sector or specialized publishers, it has seen the multiplication of production bodies: pharmaceutical laboratories, patient associations, doctors, etc.; information validation circuits, where they exist, have also diversified. These transformations accompany other developments in the field of medicine. The development of the medical Internet, the setting up of patient files and telemedicine have led us to reexamine the question of confidence in the field of health, whether it is in the relationships between actors, compared to the information found on the Internet, disseminated by institutions or obtained from professionals, or in relationships that are formed with information-communication devices, including medical information systems. Finally, discourses on patient empowerment, whether they come from public authorities or health institutions, lead us to consider this movement by questioning the notions associated with it, such as autonomy, understanding, participation or even trust. The Trésor de la Langue Française defines trust as the “spontaneous or acquired belief in the moral, emotional, professional value ... of another person”. According to the philosopher Michela Marzano, trust refers to the idea that one can trust someone or something. In particular, she wrote, “the verb confide (from the Latin confidere: cum, with and fidere, proud) means, indeed, that something precious is given to someone, trusting him and thus abandoning yourself to his goodness and his good faith” [MAR 10]. Thus, we trust a person or device that we consider reliable based on our own criteria. Confidence also refers to a sense of security: a “climate of trust” evoking a situation that appears reassuring. In the presentation of one of the Réseaux editions published in 2001 about trust, Louis Quéré was interested in its other aspects, such as the inter-organizational trust mentioned by Edward Lorenz and the conditions favoring it. Here, we connect trust and legitimacy by proposing to question the way in which the legitimacy of information is built, particularly in information-communication devices in the field of health. Certifying health information sites by the Health On the Net (HON) Foundation, accredited by the Haute Autorité de Santé (HAS), is an example of the legitimization of health information intended to give reliability that provides guarantees and, therefore, trust to users. However, the conventional criteria

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of peer evaluation as practiced in the context of scientific publication activity cannot be applied during mass dissemination of medical information, since health professionals cannot respond to a large number of requests. Validation of content is lacking [REN 09]; legitimacy is exercised in the field of information quality, certified or labeled, which can be identified by a logo said to be “of quality”. In this context, the legitimacy conferred by the attribution of a quality logo appears above all as a guarantee of credibility for site publishers, which does not necessarily result in a higher visitor rate. This raises the question of the criteria used by Internet users to trust health information sites, as well as the question of the different forms of certification put in place by producers of health information services. Sociology highlights the confidence crisis that has affected medicine and its impact on professional territories [AÏA 94, BRO 94]: an increase or decrease in medical power, leading to a loss of influence of physicians on public policy decisions [HAS 99]; a change in the relationship between physicians and patients due to widespread access to information on the Web; a judicialization of medicine [LAN 04] and, finally, the development of selfmedication practices [FAI 12]. This loss of confidence has various consequences for the information practices of patients and health professionals alike, which need to be studied carefully. The motivations that lead players in situations of distrust to use information are questioned here. This book is composed of 12 chapters and several theoretical reflections, case studies and much feedback considering trust and the process of legitimizing information and communication in the field of health. In these chapters, the issue is addressed either in a professional context, within institutions, in companies and in healthcare organizations, where trust is most often considered in relation to internal information-communication devices, public health policies and actors in the field of health; or in an individual approach, where trust is generally addressed in the context of relationships between citizens and public authorities or medical professions. Four chapters situate their investigations in a personal and familial context. Confidence is envisioned especially when citizens are asked to inform themselves in order to make a decision related to their health or that of their relatives.

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Vaccination is discussed in Chapters 1, 2 and 3, first by Mylène Costes, who questions the information sources that parents use to vaccinate their children; then by Maryline Vivion, who discusses the hesitation of young parents to vaccinate, considering this approach as favoring the development of an informational habitus allowing us to apprehend a large amount of contradictory information on the subject and finally by Ève Dubé and Dominique Gagnon, who specifically address the impact of information sources on decision-making in the event of vaccination. In Chapter 4, Clément and Denis Dussarps focus on the informationcommunication practices of parents of autistic children on the Web. Eight chapters in this book consider the question of trust in a professional and organizational context. The study presented in Chapter 5, written by Anna Lezon-Rivière and Madjid Ihadjadène, is associated with the French Army and analyzes the relationship between confidence and information practices of flight nurses in emergency situations. Chapters 6 and 7 focus on trust in the prism of public health and health communication policies. In Chapter 6, Omrane Dorsaf and Pierre Mignot address online communication practices in the face of the confidence crisis in the prevention of breast cancer. Nathalie Verdier, in Chapter 7, analyzes, through the case of music therapy, the role of information activity in the process of building trust between players centered on a care practice that is not well recognized on the public policy scene and in the French health system. In Chapters 8 and 9, the authors discuss trust between players in the field of health. Pamela Baillette and Michel Mannarini, in Chapter 8, are interested in the interrelations between the players involved in the process of care and processing of information in hospitals, and wonder more specifically about the role played in the matter by internal medicine, in charge of coordinating and integrating care. In Chapter 9, Aurélia Dumas questions the obstacles encountered when establishing a relationship of trust within a health service at work.

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Connected health is dealt with in Chapter 10 by Adrian Staii. The author is interested in devices, the uses that are made of them and the political and societal issues they reveal. Finally, Chapters 11 and 12 propose a reflection on trust in relation to information-communication devices. Géraldine Goulinet-Fité and Didier Paquelin, in Chapter 11, analyze the co-use of an informationcommunication device among elderly patients, close caregivers and nursing staff, centered around the functions of help, support and assistance inherent in “caring” at home. In Chapter 12, Roxana Ologeanu and David Morquin study the place of the computerized patient file in doctoral practices and show, in particular, the difficulties in organizing the information contained in the CPF with regard to the very large number of players and their diversity. References [AÏA 94] AÏACH P., FASSIN D. (eds), Les métiers de la santé : enjeux de pouvoir et quête de légitimité, Anthropos-Economica, Paris, 1994. [BIZ 08] BIZOUARN P., “Le médecin, le malade et la confiance”, Éthique et santé, vol. 5, no. 3, pp. 165–172, 2008. [BRO 94] BROCLAIN D., “La médecine générale en crise”, dans AÏACH P., FASSIN D. (dir.), Les métiers de la santé: enjeux de pouvoir et quête de légitimité, pp. 122–160, Anthropos-Economica, Paris, 1994. [FAI 12] FAINZANG S., L’automédication ou les mirages de l’autonomie, Presses universitaires de France, Paris, 2012. [HAS 99] HASSENTEUFEL P., “Vers le déclin du ‘pouvoir médical’? Un éclairage européen : France, Allemagne, Grande-Bretagne”, Pouvoirs, no. 89, pp. 51–64, 1999. [JAU 03] JAUNAIT A., “Comment peut-on être paternaliste ? Confiance et consentement dans la relation médecin-patient”, Raisons politiques, no. 11, pp. 59–79, 2003. [LAN 04] LANSAC J., SABOURAUD M., “Les conséquences de la judiciarisation de la médecine sur la pratique médicale”, Les Tribunes de la santé, no. 4, pp. 47–56, available at: www.cairn.info/revue-les-tribunes-de-la-sante-2004-4-page-47.htm, 2004.

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[MAR 10] MARZANO M., “Qu’est-ce que la confiance ?”, Études (revue de culture contemporaine), available at: https://www.revue-etudes.com/, January 2010. [MAU 12] MAUREL D., CHEBBI A., “La perception de la confiance informationnelle”, Communication et organisation, no. 42, pp. 73–90, 2012. [QUÉ 01] QUÉRÉ L., “Présentation”, Réseaux, no. 108, pp. 9–12, 2001. [REN 09] RENAUD L., CARON BOUCHARD M., “Impact d’un site internet dans une campagne de promotion de la santé : le ‘Défi Santé 5/30’”, Santé Publique, vol. 21, special-issue no. 2, pp. 89–103, 2009. [SAO 09] SAOUT C., “La crise de confiance dans le système de santé”, Les Tribunes de la santé, no. 22, pp. 119–132, 2009. [SUT 05] SUTTER E., “Certification et labellisation : un problème de confiance. Bref panorama de la situation actuelle”, Documentaliste-Sciences de l’Information, vol. 42, no. 4, pp. 284–290, 2005.

1 Information Sources on Childhood Immunization

1.1. Introduction The heterogeneity of health information on the Internet is well established, and it is even growing. Henceforth, medical information (professional) and health information (general public) coexist in complementary uses [ROM 08]. At the same time, over the past 10 years, there has been a shift toward industrialization of health-related information, characterized by a lack of control from both the state and the medical sectors [ROM 08]. In this context, the search for health information is characterized by a predominant use of the medical Internet, the most popular source of information for the French [IPS 10]. However, despite a major increase in the amount of available information, there is a persistent crisis of trust1 among the French regarding the health system due to cyclical and systemic circumstances [SAO 09]. The information systems established by governments are little mobilized, and institutional websites do not provide the reassurance sought by the user [TOU 10]. Trust has been undermined by media coverage of different health issues. In this difficult context, we wanted to understand how parents learn more about vaccinations for their children. On the basis of the example of vaccination, despite the absence of a health scandal, several controversies have emerged and spread widely (e.g. with Chapter written by Mylène COSTES. 1 Trust here is understood according to the definition proposed by Le Trésor de la Langue Française: “spontaneous or acquired belief in the moral, emotional, professional value ... of another person, which makes it impossible to imagine any deception, unfaithfulness or incompetence from this person”. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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hepatitis B or H1N1 flu), reinforcing the distrust of the population vis-à-vis pharmaceutical industries and the political world [SAR 12]. Medical progress has the observable counter-effect of an increase in the perception of vaccine risk, which outweighs the perception of the risk of disease [VIÉ 16]. A form of anxiety toward the vaccination act [AMO 13] has developed, reinforced by a context of over-information that tends to complicate the identification of the risks involved in non-vaccination [BAL 07], thus contributing to a decrease in vaccination coverage [DOM 10]. Therefore, the question here is to define the process of informational research and sketch a comprehensible outline of the construction of legitimacy2 or the more reserved attitude that parents adopt toward vaccination information. In other words, what sources are used for information? What are the legitimacy criteria for the information and confidence retained by the parent? To answer these questions, we propose an analysis in three stages. The first stage will contextualize our study by questioning the trust toward vaccination. This will be followed by an inventory of a studied group’s information health practices. In addition to being complementary to studies already conducted in communication-information, this stage will provide an opportunity to question the criteria that indicate the legitimacy of health information to the parent. What about the information that circulates? We think, in particular, that health information on the Internet, health forums such as Doctissimo, has public support [TOU 08]. We will then focus on informational sources of childhood immunization. The aim is to understand which media reach parents in a relevant way among the multitude of information disseminated by the government through different organizations (the Ministry, centre de protection maternelle infantile [maternal-child protection center] (PMI), Institut national de prévention et d’éducation pour la santé [National Institute for Prevention and Health Education] (INPES), health books, maternity services, information campaigns, etc.). We will also see that the number of parents seeking information on the subject remains low, which is a fact often justified by the trust placed in the medical profession, which is reflected throughout the research. Finally, we will discuss how this trust is built.

2 Le Trésor de la Langue Française defines legitimacy as the “conformity of something, of a state, of an act, with equity, natural right, reason, morality”.

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1.2. Methodology The survey was conducted in July and August 2016 in a pediatric practice. We interviewed parents who used a pediatrician and not a general practitioner for the medical monitoring of their children to optimize the rate of participation. This aspect should therefore be taken into account when reading the results. In practical terms, we welcomed volunteers in a dedicated office space following their consultation, after which the pediatrician asked the parents to participate in a survey with the aim of improving research on the subject of childhood immunization. The parents were also informed that this study was carried out by an outside researcher who had no implication in its realization except that of proposing it. As researchers, we considered this study in a dual interest: first, it was to think of a tool that would provide answers to initial questions, and it was necessary to design a measurement tool that could be reused on a larger scale to quantitatively confirm the trends revealed during this first exploratory qualitative survey. We therefore opted for a survey at the intersection of the directive interview (oral questionnaire) and the semi-directive interview by including several open questions. We wanted to bring qualitative elements, since there are still a few studies on the understanding of behaviors and sources of information related to vaccination and especially that of children. Studies conducted in France focus mainly on immunization coverage; they are most often carried out in schools through the analysis of health records [GOI 15]. When preparing the questionnaire, we were inspired in part by that developed as part of the VACSATC (Vaccine Safety: Attitudes, Training and Communication) study. Conducted in five European countries in 2009, this study included a survey of more than 6,000 patients to determine their sources of vaccination information and the level of confidence they had in them [MOU 12]. The designed interview grid is organized around four approaches: information-seeking practices related to health, knowledge and representations of vaccination, access to information and information retrieval on immunization and, finally, suggestions of health professionals about it. A total of 52 people were interviewed. The breakdown is as

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follows: 43 women and eight men, 51 of whom were in the age group of 25–49 years; two people were graduates of the brevet (French diploma of higher education); 12 were high school graduates; 26 were graduates with a higher undergraduate diploma (bac +2/+3); and 12 were college graduates (bac +4). With regard to occupations and socio-professional categories, we counted: one working farmer; three people who were craftsmen, tradesmen and entrepreneurs; five managers and higher intellectual professions; 20 people with intermediate professions; 18 employees; one laborer; and four unemployed. Now, let us review the context of the research. 1.3. Vaccination: a proven trust 1.3.1. Loss of trust in the vaccination act Trials for health issues are constantly increasing [SAO 09], and the justice system condemns parents who do not adhere to the medical obligations imposed by the legislation3. Under this climate of distrust and the awareness of the growing concerns of the population on this subject, the French Ministry of Health launched an action plan on January 12, 2016, for the renewal of its vaccination policy4 [HUR 16]. In this context, a citizen consultation was set up via the website concertation-vaccination.fr5 [COM 16]. This device reflects the appropriation of this subject by the government with the intention of reassuring the French. For their part, health professionals note that an increasing number of parents find it difficult to decide whether or not to vaccinate their child. This can be due to the disappearance of almost all diseases in Europe for several decades (tetanus, poliomyelitis, diphtheria) and the underestimation of the potential severity of the existing diseases (pertussis, measles, meningitis and mumps). There is a lack of knowledge and research information on these pathologies. Public health campaigns on vaccination are not mentioned among the sources of 3 For example, the conviction of a couple by the Auxerre correctional court, sentenced to two months (suspended) for refusing to vaccinate their child against the compulsory vaccine “diphtheria, tetanus, poliomyelitis” (DTP) [LEM 16]. This trial revealed a little more about the lack of trust on this subject. 4 This plan was launched following the presentation of the “Rapport sur la politique vaccinale” by Sandrine Hurel [HUR 16]. 5 Everyone was free to give their opinion on the subject of vaccination in three contributing tabs presented as: “express here your opinion on vaccination in a broad sense”, “what recommendations would you make to improve trust in the vaccine?” [We emphasize this] and, finally, “what recommendations would you make to improve vaccination coverage?”

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information used [AMO 13]. Insufficient access to information and lack of trust in both government and pharmaceutical industries create negative attitudes among parents [GUS 05, RAI 03]. 1.3.2. The vaccination obligation In the field of health, the vaccination theme has the specific feature of being one of the few for which the free consent of the patient is not required6. It should be remembered that some vaccines are mandatory as soon as we enter the community. Thus, the free consent intended to favor freedom and reduce the authority of the State [JAU 03] is not applicable on this subject7; it cannot, therefore, be a constituent element of trust in the act. Therefore, in this context, where the vaccination act is legally imposed, can we really speak of trust? The legitimacy of vaccination is not questioned, but it can be thought of as a form of attack on individual liberties, a kind of “upset freedom” [HAS 99, TAB 09]. In addition to the trust in information sources, the trust attributed especially to health professionals raises questions. This point has already been the subject of various studies in the fields of medicine as well as information and communication sciences or management sciences. It should be noted that the loss of confidence in health professionals has increased the search for online information and more particularly the use of forums such as Doctissimo [TOU 10]. Trust is built thanks to the information provided and the behavior of health personnel [PHA 02]. Regarding the more specific question of vaccination, trust between health professionals and parents is a major factor in influencing parental decisions about vaccines [AMO 13, FOR 07]. Here, more than trust, we think it could be “accommodation” of a form of “forced trust” on the part of parents. In the conceptual line of the work of Romeyer [ROM 08, ROM 12], our first hypothesis lies in the idea that parents refer more extensively to health information via the Internet, but give confidence and legitimacy to medical information, especially when it is provided directly by a health professional. From this follows our second hypothesis, according to which reliance is fundamental to the construction of a feeling of trust from 6 However, it appears that the freedom of decision left to the patient has significantly reduced overall and not just in the context of vaccination [SAO 09]. 7 In the name of collective protection, the immunization obligation of children is still a paradox in the French health system because it counters the law according to which one cannot impose an act on a subject without his/her consent (Kouchner Law of 4 March 2002 on the rights of the sick and the quality of the health system).

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the parent about the vaccination act. Reliance will be understood here as allowing the maintenance of trust in care through the relationship. We will try to verify the findings established in a hospital environment, according to which trust takes shape during the relationship and by the relationship [PHA 02]. 1.4. Health and legitimacy information retrieval: an ambivalent stance 1.4.1. Health information research practices Health information retrieval is a common practice. The 46 parents interviewed had already personally searched for information related to health. Research via the Internet is widely acclaimed (39 parents) with a significant use of forums in almost every other case. Doctissimo was largely in the lead (referred two times out of three during the consultation of forums). How can these research practices be explained beyond the need for exchanges and opinions from the public sphere [ROM 08, ROM 12]? The criteria for the choice of sources, mentioned by the parents during research in connection with health, reveal that a majority does not have specific habits or research criteria, which was already the case at the beginning of the medical Internet [NAB 02]. They rely on the first pages displayed on the results list, essentially favoring the speed and practicality of the search tool. This result confirms the correlation too often established between the accessibility of information sources and the perception of the quality of information [MAU 12]. In more than one case out of two, there is no real search strategy or even selective criteria: 11 parents admitted to having no criteria and 17 preferred to rely directly on the first results of the search engine used (Google was the only search engine used). The prevalence of using Google in health information retrieval is not new [REN 07], and confirmation is found here. The professional or official nature of the source was stated as a selective criterion by only seven parents. However, the professional or official aspect of the website is invoked as a pledge of the quality of the information found, a reassuring element in the face of a health information context that is considered stressful and frightening: “I look at the source, if it’s something from the Ministry, I tell myself that they don’t speak rubbish. I hope,

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because with all the information that there is, one is never sure. On social networks, there is a lot of stuff that circulates like that, such as some medicines being carcinogenic, at first it’s scary to read” (Interview 15). The other reasons given relate to the ease of use of the site as well as sources providing testimonials and notices, which is mainly the case for forums. There are several reasons for parents using Doctissimo for their information retrieval. First, because this site appears frequently in the first results of a search via Google, its referencing is one of the first explanations of its success as well as its ease of use and the possibility of quickly obtaining a first level of accessible information. It should be remembered that this site has always been the subject of excellent referencing [REN 07]. Another element, its name using a prefix that is very evocative of the medical environment, tends, at least at first glance, to reassure the parent in search of health information: “Doctissimo, it must have been one of the first forums and then its name inspires confidence even if you should not believe everything you read” (Interview 51). “Doctissimo, before, I had the impression that it was more serious because of the site name” (Interview 31). “Doctissimo is quick at obtaining the first pieces of information, after, of course, I consult a doctor” (Interview 37). We perceive there to be a certain distance from this source. It is spontaneously alluded to as having been used, but only in earlier periods, as if the parent acknowledged having carried out an irrelevant research practice: “We look without taking the information, it is not a Bible” (Interview 12). “I consulted Doctissimo but it’s so unreliable that I don’t use it very much” (Interview 31). “But now I do not look because it will worry me” (Interview 42). “I have given up with forums because they do not suit me very much as a form of information” (Interview 25). When they are not mobilized as a source of information, forums do not have a good reputation in terms of reliability: “I avoid forums. “I do not look at forums, I feel that all of them are nuts. It’s exaggerated sometimes, it’s scary, often it goes wrong” (Interview 23). Forums are thought of in opposition to professional information; the individual aspect of the discourse sometimes leads to patient anxiety: “Forums are always bad, I avoid them” (Interview 23). “I have less confidence in forums as it is Mr. or Mrs. Everyone who gives his or her opinion” (Interview 24). “On forums, there is everything. People put everything and anything, specialized sites are more serious, it is medical information and not everything else” (Interview 43). Followed by forums, specialized health sites represent just more than 28% of the sources consulted online. However, parents have few memories of the sites in question. The finding is similar for the use of newspapers that are

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general or specialized (popularized for the general public). The magazines attract more attention, and titles are simply mentioned: Top Santé, Santé Magazine, Science and Vie, etc. It should be noted that online health information for parents does not appear to be reliable, as sources are difficult to identify. Several studies revealed that the multiplicity of professional interventions is not necessarily a guarantee of quality [BAN 16]. We note that although consultation via the Internet remains the first reflex for many parents, it is not the only place for information retrieval. What they find is often confronted, a posteriori, with the opinion of a professional: “I will look on the Internet but I know that it is the doctor who will have the last word” (Interview 5). “I type on Google and mainly I go on Doctissimo, I look for minor injuries or I’ll see the pediatrician” (Interview 47). The questioning of the health professional appears important for the parent, but it is only seen as a secondary step. This is evidenced by the low rate of direct questioning of a health professional (i.e. without prior research on the Internet) since only one out of 10 parents use it because they do not grant legitimacy to the medical information found online and, therefore, do not consult it. Does this mean that parents do not trust health professionals? Far from it, because it turns out that the criteria of legitimacy are far removed from proven research practices. 1.4.2. Criteria for the legitimacy of online medical information To understand these results and discuss them, we asked parents about what makes online medical information legitimate to them. The data collected are quite enlightening and reflect a certain gap between the representation of legitimate health information and the research tools or sources used to access them. Like what has been observed on mainstream health sites [ROM 12], what makes online medical information legitimate is the so-called “official” source: medical, professional or governmental for 22 parents. For others, the information is considered legitimate when several sources overlap. Thus, six parents compare the results found on several sites. If there is overlap, then they believe that the information found is reliable, which is not without raising the major problem of disseminating false information. Interview analysis reveals that the multiplicity of sources consulted often reflects a feeling of stress related to health issues: “I look at several websites at the same time. I consult several websites to have confirmation and I increase the number of consultations because I will be

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worried otherwise” (Interview 3). This anxiety translates into low levels of trust in the information found on the Internet. Finally, for a minority (four parents), the validity of the information remains relative to their feelings or writing styles. It should also be noted that paradoxically, with regard to their research practices mentioned above, only one parent declared that the information is legitimate when it is accompanied by personal opinions (i.e. subjective, and without founded medical advice and sometimes even experience). The latter, like the experiential accounts, are mainly mentioned as not being information to store: “I would rather refer to specialists; if it is a specialist article I would grant it more attention than if it is a mother who’s writing about her experience” (Interview 4). “For me the information is legitimate when it comes from professionals. Moms’ forums are unbearable” (Interview 11). It seems that this is a specific feature related to the subject of vaccination because the studies carried out in informationcommunication concerning health information retrieval attest mainly a marked attraction to the forums [PAG 11, TOU 08, TOU 10]. The interest in testimonies is indicative of emotional information and not purely medical [ROM 08]. It represents a form of validation of information based on experience rather than expertise [PAG 11]. In our study, forums are not very popular. However, this particularity deserves to be nuanced because it has been shown that social media sites (including forums) present a double discourse (patient and professional), and the reference to the medical profession is still present in various forms [PAG 14]. The information disseminated by laboratories is also considered by the parents as questionable information because it is conditioned by economic logic: “I think there is manipulation on the part of the labs so I am not entirely reassured and I don’t find it normal to not be able to choose the vaccine that we want because of the packages. For me it’s scandalous” (Interview 50). This testimony refers to one of the major criticisms formulated by vaccination critics, namely the impossibility of obtaining a vaccine containing only the compulsory vaccines. It seems to be representative of a forced positioning of the parent faced with the vaccination of their child. This point partly motivated the construction of our hypothesis of an attitude of “forced trust” on the part of the parent.

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The legitimacy of online information therefore remains relative, far from leading to consensus. Parents have difficulty in deciding on its reliability, preferring to rely instead on a professional opinion: “We prefer medical advice; we do not take into account what is recounted on websites” (Interview 33). Let us more specifically explore the information sources available to parents about vaccination. 1.5. Parents’ knowledge of vaccination 1.5.1. Lack of knowledge and limited use of the available information In our study, 46 of the 52 parents interviewed were in favor of vaccinating their children, and the other six neither agreed nor disagreed. However, very little is known about the vaccines and confusion remains high between the mandatory and recommended ones. For example, a large majority think that the MMR (measles, mumps and rubella) vaccine is mandatory. This limited knowledge of vaccines can be explained by a lack of documentation on the subject, or, to be more precise, by a lack of consultation on the part of the parents, because the documentation itself exists. There are plenty of information sources. Every parent is confronted at least once, either at the maternity ward or when consulting a health book, to name the main sources. Among the parents surveyed, only one out of two remembered having access to documentation on this subject. Among the main sources mentioned (two or three are often quoted at the same time), we recall the pediatrician’s office, the maternity practice and health books in similar proportions. Much more modestly listed were the television, general practitioners, PMI, schools, the press, radio, an information campaign or the Internet. In three out of four cases, this documentation was considered sufficient, so parents did not consider themselves under-informed. On the basis of the information we obtained, we asked parents about their knowledge of vaccine-related side effects. Although 45 parents had already heard of them, the interviews revealed a clear confusion between the proven effects recognized by the medical authorities and those attributed to the basis of media controversy (meaning without an established causal relationship). For one out of four respondents, the fear of developing severe or debilitating illnesses following the injection of a vaccine remains, including multiple sclerosis or autism. It is interesting to note that the parents who mentioned

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this category of adverse effects (which are not because they are not proven effects) have a fairly high level of education, the average of which is three to four years after a high school diploma. This means that, at the level of our study, the most highly educated people have a poorer understanding of the truly undesirable effects and are more likely to confuse them with uncommitted effects, most of which result from media and non-scientific controversies. Indeed, no patient with an education level below an undergraduate diploma evoked such effects (undesirable and scientifically unproven). When the side effects were addressed by this group, they were in correspondence with those recognized, such as fever and nausea. It thus appears that undergraduates have a better knowledge of the true side effects related to vaccines. The confusion expressed by most parents is partly explained by the nonconsultation of the leaflet accompanying the vaccine (45 parents). Several positions explain the lack of consideration of this source of information. The reasons are not exclusive and reveal themselves to be multiple: “Because we do not read the drug instructions in general because otherwise we would read the undesirable effects and we would not want to do it anymore. We trust the doctor if we are told to do it” (Interview 3). A total of 20 parents made up for this by referring to the trust given to the pediatrician or general practitioner. In addition to a proven effect of reassurance, we understand that this trust plays a role a priori not thought in the information sought by the patient and is partly to replace it. The following results provide a better understanding of why 11 other parents explained that they did not read the leaflet simply because they did not think about it; it can be seen as an indirect result of the trust granted, as if it justified not consulting the information made available. Moreover, it turns out that the technical and medical nature of this information is distressing for parents. This fear, which is invoked, is far from being the retained information from vaccine leaflets; it includes all the leaflets accompanying any medication. Twelve parents admitted that they do not read the leaflets, not so much by forgetting as by consciously refusing to be aware of the undesirable effects: “I think that if we read we would be scared in fact” (Interview 15); “Generally, I do not read them because there are always side effects and we are aware of them” (Interview 32). This proportion of parents wants to deliberately hide the dangers of injecting the vaccine, as they would for any other medication. Surprisingly, this distancing appears almost necessary for the

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accomplishment of vaccination, that is, they consider that reading a leaflet and, more particularly the part concerning the side effects, raises new questions and sources of fear, highly likely to call into question the initial treatment decision: “Because otherwise I would not have vaccinated. I would have asked more questions” (Interview 28). “Especially not, not for unwanted effects, no thanks, otherwise you would not do it anymore. If you do this with each medicine, you end up drinking herbal teas every night and end up on a desert island” (Interview 30). Finally, there is another potential source of information to consider: information circulating freely on the Internet. Contrary to what we initially thought, the impact on parents does not seem notable. It is the opinion issued by the professional that will allow parents to grant, or not, an interest in this information: “When there is something that will speak well of a vaccine it is said that it has come from a lab. That said, we have always vaccinated our children and we will continue to do so. It is the trust in our doctors that supersedes all these things” (Interview 30). Thus, in a context of scary information retrievals, the presence of a general practitioner or pediatrician is reassuring. However, for some, it is not enough, and the need is felt to carry out research on the subject by oneself. 1.5.2. Few parents seek information on vaccination Only eight8 parents in the sample have sought information related to vaccination. This comparatively low figure related to the percentage of Internet users looking for health information is partly explained by the injunctive aspect of this medical act. At first glance, it would be easy to assume that people seeking vaccination information consider themselves under-informed, but the study reveals that this is not the case. Information retrieval related to vaccines is not synonymous with a lack of information, since seven out of eight parents remember having access to documentation on this subject against barely one out of two for the rest of the panel questioned. In addition, the documentation provided seems rather satisfactory. The research approach is not due to a lack of confidence on the subject, since five parents are in favor of the vaccination and three neither agree nor disagree. Regarding the search strategies deployed, searching via a 8 At the level of the socio-occupational profile, these are women only, 60% of whom are graduates of higher education. This is not surprising because in the early 2000s, women and highly educated people were the two groups seeking the most information [NAB 02].

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keyword on a search engine predominates. The parents focus their research on a particular vaccine, and it is its name that is used as a keyword or more precisely the name of the pathology associated with it, such as “meningitis vaccine” and “gastro vaccine”. In almost one out of three cases, the keyword “side effects” is associated; this point is essentially true for parents who have mentioned a more mixed position on the need for vaccination. It is important to note that these parents do not limit their research to the Internet. They compared their research with the opinion of the health professional in charge of vaccinating their children. The pediatrician is often asked to bring his/her knowledge on the adverse effects or simply his/her opinion concerning specific vaccines. It should be noted that for this category (parents looking for information on vaccines), the pediatrician’s role in modifying the perception of the vaccination act is more obvious than in the other portion (44% vs. 31%), mostly for parents with mixed opinions about vaccination in this group. This means that the information delivered by health professionals has a beneficial impact of reassurance, confidencebuilding, allowing support and better acceptance by parents who are hesitant about the need for vaccination of their children. But how can this trust be explained and what are the elements involved in its construction? 1.6. The opinion of the health professional: a forced trust? 1.6.1. A discourse that can change the perception of the vaccination act This section questions the solicitation, by the parents, of various professionals as a source of information while observing the trust they are given in comparison with the sources consulted via the Internet. In our study, five parents asked their pharmacist questions about adverse effects, storage and components. Nearly one out of five asked a question to their doctor. The discussion had an impact on the perception of vaccination by the parent in 40% of cases. If we compare this with the pediatrician, the latter is naturally sought more (31 parents). However, the exchange does not have more impact on the perception of vaccination (31%). The questions asked are not only related to adverse effects but also to interest and the benefits of the recommended vaccine. The change of perception of the vaccination act by

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the discussion essentially results in a reassurance, which, therefore, promotes an acceptance of vaccines, including those recommended (not mandatory): “It made me think because I was not totally in favor of it, because she told me that there were still meningitis cases” (Interview 7). The explanations provided by the pediatrician help to curb some hesitations. However, the parents’ discourse also reflects a form of acceptance that is more or less constrained: “Especially about hepatitis because he said there was enough perspective now on this vaccine. After all, we do not have control, you know, I think we have to trust them” (Interview 49). “I think it’s his job, as we do our job we try to do it reliably. So, we give this trust in fact, but we do not know for certain” (Interview 20). However, these discourses are proportionally weak (four parents in the sample). Therefore, our initial hypothesis is not true; we are not faced with a form of forced trust. 1.6.2. Maintained trust for health professionals The parents’ trust remains fully granted to health professionals and pediatricians as a priority (in three out of four cases), followed by the attending physician. However, it should be remembered that this was only patients in a pediatric practice, so bias is not excluded here, and the results should be used carefully regarding this point. For the question, “who do you trust most about vaccinating your child?”, the results are distributed in the following way (knowing that, sometimes, two sources were referred to): the pediatrician was quoted by 46 parents, the doctor by six, a health professional by four, another parent quoted another mother and the last quoted themselves. It should be remembered that the Internet was not mentioned at all, whereas in 2012, it was still mentioned as the second most legitimate source after the doctor to learn about a health issue [ROM 12]. If this point is verified in a context of health rather than vaccination, then it would be an evolution in the consideration carried by the Net surfer on medical information. In a specialized field, it appears that health professionals maintain the trust that is granted to them, while the Internet no longer appears as a reliable tool. Pediatricians and general practitioners are considered as the most legitimate people to provide answers to parents’

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questions about vaccination of their children: the pediatrician was cited by 45 parents, and the doctor by 169. Thus, “professionalism is an element that allows the moral characterization of the therapeutic trust relationship” [JAU 03]. The question asked of parents about the justification of this trust surprised many, as if this relationship was natural and did not require much reflection. Most parents justified their choice by relying on the professional argument, the quality of specialists, placing them at the forefront of the most informed people. The interpersonal relationship created with the practitioner is also part of this feeling of trust that seems to be gradually built up throughout the care process: “because of his pediatrician, I have seen him since my son was very small, as and when consultations were needed. I have complete confidence in his pediatrician” (Interview 37). “He is a person we see quite often” (Interview 15). “It’s his job, I think he’s professional enough for that. He took care of my first, I trust him” (Interview 47). This testifies to the fact that in terms of sources of information, the interaction between people, although much less popular, remains a guarantee of the buildup of trust, since the exchange takes place with a specialist in the concerned field. Health professionals benefit from a double trust granted to them by the parent: relational trust (good intentions) and rational trust (technical skills) [PHA 02]. The character of the doctor, pediatrician or even pharmacist embodies this double trust, which explains in part that the parents grant it more to him/her. In comparison, the information sources found on the Internet can only rely on a rational trust. 1.7. Conclusion In studies previously conducted in information and communication sciences, the search for health information is characterized by an informational and emotional approach among Internet users seeking health information via forums. At present, as part of this study, this research tool appears discredited, the value “testimony” does not appear as a guarantee of 9 Other people or entities mentioned as being legitimate to answer the questions they asked about the vaccination of their child(ren) are a health professional for three parents, the Institut Pasteur for two parents, the World Health Organization for two parents, INPES for one parent, AMELI for one parent, PMI for one parent and the Ministry of Health for one parent.

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legitimacy and the trust granted to it remains weak. The need for reassurance is with health professionals. It remains to be clarified whether this finding is specific to the topic of childhood immunization or if it can be extended to other health research. More studies are needed to judge. Similarly, conducted on a larger scale, the study should make it possible to draw up parent profiles in order to be able to adapt the vaccination discourse in a more relevant way, like the survey investigating the reluctance of parents to hepatitis B vaccines [LIM 15]. Meanwhile, we can report here an opposite trend in the report on the Net surfer regarding the devices and informational sources: the Internet is no longer acclaimed to verify a medical discourse, since the decision-making by the parent is done only after discussion with health professionals, which reinforces the trust traditionally granted to them. Certain initial hypotheses have been confirmed here, which now deserve to be tested by a larger number of cases. Other hypotheses proved to be less relevant, nevertheless allowing the emergence of other lines of research. We note that parents do not really understand the official information available. The information sites frequently used are far from being the ones they consider the most legitimate; the information found online has only a small impact on the representation of the vaccination act. Regarding search methods, referencing and practicality of the websites are the first advanced criteria. Nevertheless, the legitimacy of the information found is lacking. It is more attributed to information whose professional nature is identifiable. However, legitimacy is not spontaneously a pledge of trust. The passage from one to the other, which explains the reassurance of the anxious parent facing the act of vaccination, is reflected through the interpersonal relationship that is built during exchanges between the parent and the pediatrician (or treating physician). Thus, already recognized and still recently so [HUR 16], the essential role of health professionals in the explanation they can give to patients on both the benefit/risk balance and the adverse effects is reinforced by our study. Our second hypothesis is well verified, so we can confirm that reliance allows the maintenance of this parental confidence in the vaccination act. Therefore, despite a temporary enlargement of immunization obligations, the report emanating from the citizen consultation (November 2016) calls for a lift on vaccination obligation. Thus, the trust placed on health professionals is all the more important to maintain and develop.

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1.8. References [AMO 13] AMOUYAL M., VALLART M., BOURREL G. et al., “Que pensent les parents de la vaccination? Une étude qualitative”, Exercer, la revue française de médecine générale, vol. 24, no. 105, 2013. [BAL 07] BALINSKA M.A., LÉON C., “Opinions et réticences face à la vaccination”, La Revue de Médecine Interne, vol. 28, pp. 28–32, 2007. [BAN 16] BANTI T. et al., “Diversification alimentaire : l’information disponible sur internet est-elle en accord avec les recommandations des sociétés savantes?”, Archives de Pédiatre, October 2016. [COM 16] COMITÉ D’ORIENTATION DE LA CONCERTATION CITOYENNE SUR LA VACCINATION, Report, available online: http://concertation-vaccination.fr/category/ rapport/, 2016. [DOM 10] DOMMERGUES M.A., “Vaccination rougeole : comment convaincre les parents?”, Mt Pediatrie, vol. 13, no. 5, pp. 392–397, 2010. [FOR 07] FORTUNE J., KUMAMAN W., “Préserver les relations avec les parents anti-vaccins, cinq suggestions tirées de la psychologie sociale”, Canadian Family Physician, vol. 53, no. 12, pp. 2093–2095, 2007. [GOI 15] GOIRAND L. et al., “Méthode et participation à une enquête en milieu scolaire sur la vaccination des enfants isérois (2010/2011)”, Santé Publique, vol. 27, no. 6, pp. 809–818, 2015. [GUS 05] GUST D. et al., “Parent attitudes toward immunizations and healthcare providers: the role of information”, American Journal of Preventive Medecine, no. 29, pp. 105–112, 2005. [HAS 99] HASSENTEUFEL P., “Vers le déclin du ‘pouvoir médical’? Un éclairage européen: France, Allemagne, Grande-Bretagne”, Pouvoirs, no. 89, pp. 51–64, 1999. [HUR 16] HUREL S., Report on vaccination policy, Report, Ministère des Affaires sociales, de la Santé et du Droit des femmes, 2016. [IPS 10] IPSOS CNOM, Survey of 1014 individuals, available at: http://www. conseil-national.medecin.fr/sites/default/files/sondage%20internet%20CNOM% 202010.pdf, 2010. [JAU 03] JAUNAIT A., “Comment peut-on être paternaliste ? Confiance et consentement dans la relation médecin-patient”, Raisons Politiques, no. 11, pp. 59–79, 2003.

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[LEM 16] LE MONDE, “Refus de vaccination: un couple condamné à 2 mois de prison avec sursis”, Le Monde [online], 7 January 2016. [LIM 15] LIMOUSI F. et al., “Les réticences des parents face à la vaccination contre l’hépatite B en France; une enquête en ligne auprès de 5922 parents”, Bulletin épidémiologique hebdomadaire, nos 26–27, 2015. [MAU 12] MAUREL D., CHEBBI A., “La perception de la confiance informationnelle”, Communication et Organisation, available at: http://communicationorganisation. revues.org/3864, 2012. [MOU 12] MOURIER-DUMAS A., Sources d’information et d’influence dans la vaccination, Thesis, Jean Monnet University, 2012. [NAB 02] NABARETTE H., “L’internet médical et la consommation d’information par les patients”, Réseaux, no. 114, pp. 251–285, 2002. [PAG 11] PAGANELLI C., CLAVIER V., “Le forum de discussion : une ressource informationnelle hybride entre information grand public et information spécialisée”, dans YASRI LABRIQUE E. (dir.), Les forums de discussion : agoras du XXIe siècle ? Théories, enjeux et pratiques discursives, L’Harmattan, Paris, pp. 39–55, 2011. [PAG 14] PAGANELLI C., CLAVIER V., “S’informer via les médias sociaux : quelle place pour les experts ?”, Le temps des médias, no. 23, available at: http:// www.histoiredesmedias.com/S-informer-via-des-medias-sociaux.html, 2014. [PHA 02] PHANUEL D., “Confiance dans les soins et soin de la confiance : la réponse relationnelle”, Politiques et Management Public, vol. 20, no. 4, pp. 115– 132, 2002. [RAI 03] RAITHATHA N. et al., “A quantitative investigation of vaccine risk perception amongst parents who immunize their children: a matter of public health concern”, Journal of Publication Health Medicine, vol. 25, no. 2, pp. 161– 164, 2003. [REN 07] RENAHY E., PARISOT I., LESIEUR S. et al., WHIST : Enquête web sur les habitudes de recherche d’informations liés à la santé sur internet, Inserm UMR-S 707, Paris, Faculté de Médecine Pierre et Marie Curie, Site Saint-Antoine, 2007. [ROM 08] ROMEYER H., “Tic et santé : entre information médicale et information de santé”, TIC et société, available at: http://ticetsociete.revues.org/365, 2018. [ROM 12] ROMEYER H., “La santé en ligne : des enjeux au-delà de l’information”, Communication, vol. 30, no. 1, available at: http://communication.revues.org/ 2915, 2012.

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[SAO 09] SAOUT C., “La crise de confiance dans le système de santé”, Les Tribunes de la Santé, no. 22, pp. 119–332, 2009. [SAR 12] SARDY R. et al., “Représentations sociales de la vaccination chez les patients et les médecins généralistes : une étude basée sur l’évocation hiérarchisée”, Santé Publique, vol. 24, no. 6, pp. 547–560, 2012. [TAB 09] TABUTEAU D., “Santé et liberté”, Pouvoirs, no. 130, pp. 97–111, 2009. [TOU 08] TOUBOUL A., VERCHER E., “Communication et santé : entre rationalité marchande, logique d’information et communauté d’intérêt”, Tic et Société, vol. 2, no. 1, available at: http://ticetsociete.revues.org/378, 2008. [TOU 10] TOUBOUL A., VERCHER E., “L’internet santé: stratégie commerciale et développement communautaire”, dans ROUTIER C., D’ARIPPE A. (dir.), Communication et Santé : Enjeux Contemporains, Presses universitaires du Septentrion, Villeneuve d’Ascq, pp. 153–162, 2010. [VIÉ 16] VIÉ LE SAGE F., “Le mouvement antivaccinal : analyse d’un phénomène de société”, Médecine et Enfance, vol. 36, pp. 233–238, 2016.

2 Web 2.0, Parenting and Informational Habitus

2.1. Vaccine hesitancy: a manifestation of parental approach During the post-natal period, women have an increased need for information, attributed to significant changes due to the arrival of a child [CAR 07, SLO 17]. Added to this, the norms and ideals of “good” motherhood put pressure on new mothers who need to make many decisions regarding their children’s health and development [BUS 01, LEE 08]. Indeed, parenthood is subject to many normative representations and several theories have sought to explain the role of parents in the care and education of children [HOL 10, VIN 09]. In North America, a child-centered model dominates, giving rise to what Hayes has called intensive mothering [HAY 96]. Intensive mothering is a model in which the children’s needs are central, and decisions are guided by experts. It is emotionally absorbing, labor-intensive and expensive [HAY 96]. This model is also part of a context in which “informed choice” plays an important role. The importance given to informed choice in health can be linked to, among other things, feminist movements [BEL 10, SAI 85], the goals of which were manifold. They aimed to denounce the hegemonic and patriarchal nature of expert knowledge about women’s bodies, the dehumanization of care in favor of technology and the effect of biomedicine on women’s care [AND 03, HUN 96, SAI 03]. In this perspective, expert knowledge is based on scientific evidence coming from rigorous research results (Department of Health cited in [HAR 04, p. 32]). In this context, feminist Chapter written by Maryline VIVION. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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movements aimed to empower women to regain their autonomy, particularly in connection with decision-making with regards to health [BEL 10, SPO 10]. The concept of empowerment refers to the ability of individuals and communities to exercise control over the definition and nature of changes that affect them [RAP 87]. For feminist movements, empowerment is associated with the concept of informed choice, which appears as a cornerstone of the empowerment process [BEL 10]. Consequently, the promotion of women’s autonomy, the rejection of expert knowledge as the only valid one, in particular by reclaiming the value of women’s experiential knowledge, and the importance of getting involved in all health decisions resulted in an enhancement of information retrieval in order to make decisions [LEM 08]. These movements, which initially targeted women themselves, quickly spread to these women’s children. In Quebec, this is reflected in several resources offered to mothers on the Internet, for example, websites specifically dedicated to parenting, such as Maman pour la vie and Naître et grandir. In addition, on the Internet, many groups for new mothers present themselves as essential resources to help mothers meet the demands of parenting. The phenomenon of vaccine hesitancy can be understood as the willingness to make informed choices. Vaccine-hesitant parents can choose vaccines, delay vaccination or follow the recommendations of the health authorities, while having significant fears and doubts [DUB 13]. In Quebec, vaccination is not mandatory, and it is estimated that nearly a third of parents are hesitant about vaccinations [BOU 15]. Some authors attribute this phenomenon to the proliferation of information on the Internet [BET 10, SID 13]. Several studies indicate that anti-vaccine messages found on the Internet facilitated the dissemination of myths and misconceptions about vaccination [BEA 11, KAT 10, WIT 12]. However, these studies do not consider the heterogeneity of the phenomenon of vaccine hesitancy. Indeed, it is important to distinguish vaccine hesitancy, which reflects “normal” and legitimate questions, from vaccine hesitancy by parents who are truly ambivalent about vaccination [DUB 16]. In this context, this chapter aims to highlight the different mechanisms used by mothers to determine the credibility of information about vaccinations obtained on the Internet. The promotion of informed choice combined with the huge amount of information that individuals must manage implies the development of informational “skills” in order to understand this information. It creates new behaviors and even progressive changes in many habitus [BAL 14]. The

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concept of habitus, developed by Bourdieu, highlights the product of learning that has become unconscious, which is then translated into seemingly natural abilities [DOR 08]. According to Bourdieu, “reasonable”, “common sense” behaviors are generated by habitus and adjusted to social positions [BOU 80]. It should be noted that the definition given by Bourdieu is plural, which reflects the different habitus acquired during life. Indeed, the habitus is evolutive and constantly adapting to new data. Therefore, when dealing with digital revolution with an omnipresence of information, it is interesting to evoke the role played by this superabundance of information in the construction of informational habitus. The concept of informational habitus takes into account the fact that individuals are active in information retrieval related to health; however, the information they consult, the way they perceive it and the way they use it are influenced by social structures [LEW 06]. Therefore, inspired by Bourdieu’s definition of habitus, the informational habitus can be defined as follows: “All schemes of perception, thought and action related to access, acquisition and information use. The informational habitus is the result of socialization experiences and fits in a particular historical and sociocultural context. These dispositions suggest to individuals the types of information that can be acquired, as well as the possibility of evaluating different sources of information.” (Definition inspired by [BOU 80]) In this chapter, we will show that the concept of informational habitus has been articulated by Internet users around the following three notions: information practices, measures for determining the credibility of a source and information reflexivity (see Figure 2.1). Information practices help us to update the motivations for information retrieval, to situate the place of the Internet among the devices used and to identify the ways in which research is carried out. These practices also highlight the ways in which the Internet is used to inform oneself, in particular, the role of the experiences of others, discussions with other Internet users, sharing of personal experiences and so on. Mechanisms for determining the credibility of a source aim to identify the mechanisms for managing information. Finally, information reflexivity can identify the critical distance of individuals in relation to the information consulted on the Internet as well as the skills needed to evaluate the information.

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Figure 2.1. Operationalization of the concept of informational habitus

2.2. Methodology This chapter is based on an online ethnography conducted from January 1 to December 31, 2015, in which several online groups dedicated to parenting were joined. As vaccine hesitancy can be understood as the manifestation of a parental approach promoting informed choices, joining parenting groups aimed to situate vaccination among all the exchanges. The consultation of the “forum” section of parenting websites showed that mothers used this platform to create groups on the site or to join Facebook groups. A request was sent to several groups, and finally, among those who accepted the request, the two most active groups were joined. These were groups for mothers who all had the same expected delivery date (EDD), one of which was on a forum and the other was a Facebook group. For these two groups, non-participant observations were made. The initial non-participant observation period was intended to identify the rules that governed exchanges in order to understand the context in which they occurred

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[THO 12]. For the Facebook group, depending on the EDD, participant observations were made a few months after joining it, which involved exchanging with group members and asking questions about certain themes. In addition, an open Facebook group, valuing a natural approach, was also joined, because it was presented as an interesting resource by the participants for questions related to vaccination. The observations were oriented toward the topics of exchanges, including all those related to vaccination, the dynamics of the exchanges, as well as the types of contribution. These elements were inspired by an analytical framework developed by Christine Thoër [THO 12]. The study of exchanges related to parenthood through an online ethnography offers the advantage of collecting data over a long period of time and placing vaccination among all the questions that mothers may have about their children’s health. The data available on the groups were rich and, even if the members were informed of my presence, the exchanges did not seem to have been influenced by it. However, one of the important limitations was the lack of context when members were producing publications [MAR 16]. Interviewing limited this by complementing observations and linking online content to the offline context of mothers. The interviews were conducted in person with mothers who joined or did not join groups on social networks. Invitations were published on the joined groups to select participants. The majority of interviews took place at the participants’ homes, although some were conducted by telephone or Skype. The interview guide was based on the concept of informational habitus and observational data obtained in the groups. The themes were related to their use of the Internet on health topics, the mechanisms of information appropriation and the critical distance in relation to the information consulted. The interviews were conducted flexibly and in an iterative process, with the guide being adjusted as the data were collected. All publications from the forum were downloaded. Regarding the Facebook group, depending on the EDD, publications were selected during the entire observation period, including all those about vaccination. All publications related to vaccination on the Facebook group, valuing a natural approach, were downloaded, and the interviews were transcribed in full. All data were imported and subjected to a thematic content analysis using NVivo 10 software. Finally, according to the participants’ comments, a position regarding vaccination was assigned to each of the participants (in favor/hesitant/not in favor).

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2.3. Results Although the study project initially targeted both parents, it soon became clear that fathers did not participate in groups that were followed during the ethnography. This can be explained by the fact that, for health issues, mothers are still primarily responsible, even if fathers tend to play a more significant role in parental decisions [BAK 17, BUR 06]. In addition, studies have found that women do more health information research than men [COT 04, PLA 09]. The selection made regarding these groups may explain the absence of fathers in this research. In Quebec, 19 interviews were conducted with mothers who had at least one child aged 12 months or younger. The distribution by levels of education was as follows: 12 had a university degree, three had a college degree and five had a high school diploma or less. Regarding their position in relation to vaccination, seven were in favor and 12 were hesitant, of which one accepted the vaccination, eight delayed their decision or refused some vaccines and, finally, three refused the vaccination. 2.3.1. Diversified information practices Participants used different methods to search information. First, like most users, they used the Google search engine. Some went directly to official sites or even searched scientific databases with specific questions. For example, Sabrina explains her research as follows: “Yes, I have my credentials, so I tend to refer to scientific articles, do a Medline search, if I have to do it, otherwise sources like Health Canada, the Canadian National Institute for Health Research, I tend to go to the formal sources.” (Sabrina, interview) However, if the results obtained by the standard search methods were not satisfactory, some participants used social networks, for example, by asking questions on their Facebook thread or on the groups they joined. Anne-Gaëlle explains her research as follows: “[...] what I often like to do is ask on my newsfeed, “I have this situation, do you have articles to recommend?” [...] I ask the question. There are people I trust, I know that their ideas [...] make me curious and I will go in the direction they will tell me, but I will not take from the outset what they give me, I’ll go and see what I’m finally being suggested. This is a way I often use [...] to ask a question.” (Anne-Gaëlle, interview)

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As part of this excerpt, the use of social networks is oriented to obtain the viewpoint of specific people with whom Anne-Gaëlle shares opinions. This way of searching was also highlighted by questions asked about mothers’ groups, in particular, those valuing a natural approach. For example, a mother asked, “Have you vaccinated your babies? I’m very confused about it.” (Facebook group valuing a natural approach). The responses to this type of question were advice, opinions as well as reference sharing. The books frequently referred to were Qui aime bien vaccine peu! [GRO 09], Soins à mon enfant by Céline Arsenault [ARS 03] and The Vaccine Book: Making the Right Decision for Your Child [SEA 11]. These books are presented as alternative sources for vaccination and are frequently mentioned on the group. During the interviews, mothers mentioned that they consulted not only books that were suggested to them, but also health professionals or people from their family circle. This indicated that for health issues, they mobilized several sources of information. However, regarding vaccination, the Internet was favored because of its ease of access. A difference in uses was observed. For Karen, the Internet is only a complement to other sources of information, whereas for others, the Internet is the main source of information and its use is almost systematic. Alexandra expresses this aspect as follows: “[…] it’s a little silly, but as soon as I have a question, I will not necessarily ask someone [...] being face-to-face with someone will really be the last resort [...] but if I have any questions it’s going to be the [...] Internet first and then if I need to I’ll call the nurse, or I’ll ask my husband or my mother...” (Alexandra, interview) In addition, the ease of access to the Internet encouraged some participants to check all the information they receive: “You see something on TV, you check on the Internet; you read something in a book, you check on the Internet; you hear someone speak, you check on the Internet, so it’s really the Internet” (Lisa, interview). Different uses of the Internet can also be highlighted by joining or not joining groups. For example, some women joined groups of mothers with the same expected delivery date and others joined groups related to specific topics, such as feeding or carrying the baby. Most mothers had joined at least one parenting group, and only two had not joined any group. There were several motivations. The main ones were the search for experiences, to break

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the isolation, to share daily life, to seek support or to reassure oneself. The themes of the exchanges in these groups were also very varied. The main ones were breastfeeding and feeding, baby’s health and development, baby’s sleep, day-to-day management, social life and family life. It is important to note that among all the themes, vaccination was only occasionally addressed and that for mothers, vaccination is only one topic among others. Mothers joined groups with whom they shared common views about parenting. In fact, many mentioned leaving groups because they did not share the same ideas and did not always feel respected for their choice. There is therefore a form of homophilia, a concept referring to the tendency of mothers to join groups with the same sensitivity and sharing the same opinions [LEV 12]. 2.3.2. The Internet and the importance of choice The different uses of the Internet are the reflection of diversified information profiles. Indeed, if mothers were reluctant to vaccinate, they tended to seek more information and regretted the lack of nuance in information related to vaccination. This could be explained by the importance they have for choice. This aspect was frequently highlighted during interviews, and Annabelle expresses it as follows: “[...] I’m pro-choice, I’m really pro-choice, I don’t know if I can say it, but I’m for informed choice, we must be informed, we must confirm what has always been done for years, traditions, we have to confirm that it is the right thing, or we have the right to something else [...]. I’m really unwavering on it ...” (Annabelle, interview) This importance given to choice was also highlighted on the Facebook group valuing a natural approach. Questioning vaccination on this group was perceived by some as a very important step, as it meant that standards could be questioned. Others even expressed pride in questioning vaccination: “[...] I am proud to have questioned myself and questioned some common practices.” (Facebook group valuing a natural approach). This questioning of the standard emphasizes the importance of going beyond the advice of health professionals and, especially, not trusting the authorities. From then on, becoming informed has become a duty:

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“I’m also in favor of good information. The problem is that most have a blind trust in doctors and pharmaceutical companies without doing more research. It is our duty to learn more than seeking the doctor’s advice. Doctors do not have any choice other than to promote vaccination unless they want to be expelled from the College of Physicians. In short, an informed decision is needed for something as important as our children’s health.” (Facebook group valuing a natural approach) In this context, the Internet offers privileged access to information. Several participants mentioned that the Internet provided them the opportunity to become aware of the diversity of choices in parenthood while obtaining alternative information to that provided by the official health system. Sophie, for example, says: “[…] as I said earlier, [...] with health care, you have no choice, they don’t ask you: “are you going to vaccinate?”, it is “your appointment for whatever vaccines is…”, you have no choice. The Internet makes you say OK, I have questions, I will do research, what are my other options ...” (Sophie, interview) From there, the Internet is perceived as allowing more autonomy. Irene explains: “My God, long live the Internet (laughs) I would say maybe yes, without the Internet I would be more like a sheep, following the crowd without asking too many questions [...]. I took them [the vaccines] because I question myself, I read, and, for me, it is the option that I chose, but without the Internet I could not have chosen, I would have done it because you are told to do it.” (Irene, interview) The importance of choice can also become a burden; choice involves the responsibility to choose and, moreover, to choose appropriately. Indeed, the choice appears essential to the point that everything seems questionable and must, therefore, be questioned. For some, decisions based on informed choice involve significant pressure. Lisa expresses this aspect as follows: “[...] this social pressure sometimes, not everywhere, but there are some people saying that we should know everything in order to make an informed choice [...]” (Lisa, interview). This ease of access and the pressure to make a

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choice implies also being exposed to disturbing information. Participants mentioned this aspect. This exposure to information may not only lead to doubts about the decisions to be made, but also to the ability to be a mother or the child’s development. The large amount of information available was also frequently mentioned as a problematic aspect. Finally, the lack of nuanced information is, for some, a difficulty in finding reliable information. Katia expresses this difficulty as follows: “[...] in relation to vaccination, first of all, it’s clear that the Internet isn’t the place where you can easily find the right information, because there are a lot of extremes and that’s what shocked me, you type, “should I have my children vaccinated?” and you’re going to have someone who will tell you that you’ll kill them if you vaccinate them, and then someone who will tell you they will die if you do not vaccinate them. It is this big gap between information and sources that are never or almost never reliable, or often distorted or transformed or the message is changed, that’s frustrating. No matter what you choose, there will always be an article to contradict what you have chosen, and there will always be someone to send you this article. So that’s it, for vaccination the information is not uniform at all.” (Katia, interview) 2.3.3. Mechanisms for determining information credibility In this context, where the Internet offers more choices and more doubt simultaneously, the determination of information credibility by participants appears crucial. This is especially because information retrieval is motivated by the desire to make an informed choice and to question the official standards. The mechanisms for determining information credibility were of several kinds, regardless of the research theme, first, the external qualities in which the information is offered. For example, the appearance of the site, the ease of navigation and the quality of the spelling were criteria that contributed to the credibility of information.

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Then, mothers had different mechanisms to determine the information credibility, including the triangulation of information on different sites. Karen explains her validation process as follows: “[...] for example, I will go on Doctissimo, I will read the information. Afterwards, I will go on Wiki, and then I will go visit many other sites, and if the information is consistent, if it is always saying the same thing, I’m going to say: “Ok, that makes sense”. If not, [...] I will call Info-Santé or I will make an appointment with the pediatrician. I don’t take what I find on the Internet at face value.” (Karen, interview) Unbalanced information was also rejected by some participants. For example, Lisa explains her process of seeking information on vaccination as follows: “I put aside all the arguments that were all yes or no, so for or against. I put them aside, but I wonder why, [...], because there is almost nothing on Earth that is 100% good or 100% bad, you always have to balance things out. [...]. You know there is a situation around, there is a context for case-by-case, so I think for vaccination it’s the same thing. I tried to have more information that allowed me to have a judgment, to make decisions according to my situation, those who were ready to speak beyond the governmental recommendations and beyond, I would say myths.” (Lisa, interview) Finally, information credibility can be assessed by determining the information source. According to Eysenbach, Internet users would use three routes to judge information quality and credibility [EYS 08]. The first route is to use an intermediary, such as health professionals [EYS 08]. As part of this research, it was found that hesitant mothers avoided consulting health professionals because their opinion was too in favor of vaccination. However, Annabelle points out that she trusted the Passeport Santé website because it was suggested to her by her midwife1, a person she trusted: “[...] I was thinking, if midwives recommend it, it is precisely because it must not be some big brainwash, it must be that alternatives are well presented ...” 1 In Quebec, the practice of midwifery is part of a philosophy that values the normality of pregnancy, a non-interventionist approach that focuses on the judicious use of technology and is based on the principle of informed choice.

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(Annabelle, interview). The second route is to avoid intermediaries, termed “disintermediation” by the author. This can be done by searching only information validated by experts on the Internet, for example, government websites or those of professional associations [EYS 08]. This aspect was highlighted by participants who mentioned governmental websites. However, for hesitant mothers, official websites were not credible sources; on the contrary, they were websites to avoid. Finally, the third route would be apomediation, a particular form of “disintermediation”. It involves information retrieval that does not rely on expert knowledge; instead, users are guided by peers within a social network [EYS 02]. This notion of apomediation is very interesting because it determines the way in which users shape their opinion, no longer based on scientists or journalists, but on the “apomediaries” who represent the anchoring of Internet users in information analysis. This apomediation would be favored because the exchanges mobilize information rooted in everyday life and, consequently, are more accessible [THO 12]. The mobilization of the concept of apomediation is relevant, especially because mothers in this study had joined one or more groups of mothers. Therefore, it was important to question the role of information circulating in these groups. Two types of information were conveyed; primarily, experience sharing, and then mainly in the group valuing a natural approach, there were references. For some participants, mothers’ experiences could play a major role, but this varied according to situations and information needs. The experiences of other mothers are not used systematically for decision-making, but rather for normalizing situations they experience on a daily basis. With regard to health decisions, such as vaccination, mothers expressed reservations about the attention given to these experiences. For example, concerning experiences with adverse effects following vaccination, the lack of information about the context, including information about the child’s environment, was problematic for the most part. Hence, they place more importance on the experiences of mothers whom they know personally: “Once again, it’s the context. It depends on how the experience is described. Preferably, I like to know the person in real life, to take her experience as granted as they say, because once again, “I came home, then, I tell you my six-month son was in perfect health and when he had his vaccine at nine months, he became autistic”. That mom, I do not know her genetic background, nothing, meaning that from what she says, I do not know her intentions ...” (Lisa, interview)

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However, unlike lived experiences, shared references had more impact. This could be explained by the initial sharing of the vision of motherhood. 2.4. Information reflexivity The ability of a mother to step back from the information is expressed by the different mechanisms used to determine information credibility as well as the expression of the difficulties in judging validity. However, these mechanisms alone are not sufficient for mothers to trust information. Most participants needed to develop skills to be able to assess the credibility of information. All participants with a university-level education emphasized their academic capital. For example, for Sabrina, it was important to mention her academic background to explain her ability to evaluate information: “[...] Probably by my background, by my understanding also of what is happening, I’m going to tell you a bit about my background, it will perhaps enlighten you. I have a bachelor’s degree in biology, a bachelor’s degree in occupational therapy, a master’s degree in community health and epidemiology. So, my background in health as well as in community health is quite significant, I have already worked in pediatrics, as an occupational therapist, so in terms of development I am clued up enough ...” (Sabrina, interview) For Adèle, her academic background has given her the resources to verify the credibility of a source. She expresses it as follows: “Of course, it helps [...] because at university you are always asked where your source comes from [...], and if you say that it comes from Wikipedia, or something more or less recognized [...] your teacher will tell you [...] it does not work ...” (Adèle, interview) Katia talks about her studies to explain the fact that she can question the norm: “[...] I have a university education that leads me to question the State a little bit (laughs) I studied philosophy, so ... (laughs)” (Katia, interview).

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Sophie even says that distinction appears on the Internet and that some mothers are not able to assess the credibility of a source: “First, I have an education, you know, my high school diploma, but still, I have a basic education, which is not the case for everybody unfortunately. Then, when one joins a group of moms, we realize that many don’t have one at all. So, these people, I know that there are some who will believe it, because they have no filter ...” (Sophie, interview) The ability to assess information credibility is, therefore, related to school training, and Jade expresses the need for training of mothers as follows: “[...] In fact, it is not that the Internet does not have the right resources, it is that we are not (hesitation) [...] I wanted to say trained [...], we are not equipped to research in a good way what we need. The Internet certainly has all the resources we need, I do not need to go to the bookstore to get books, I do not need them in theory, but we are not well equipped to do the right research ...” (Jade, interview) For Cynthia, who did not have a university education, the evaluation of information credibility was difficult: “I do not know, then I never know if my sources are reliable, you know I type my thing in Google, and I look at what’s offered to me. [...] I never know if I can trust it.” (Cynthia, interview) Most of the participants mentioned their academic capital to explain their ability to determine information credibility; however, it was possible to distinguish two profiles: those who followed studies in the field of health or technologies that had a discourse based mainly on the expertise conveyed by governmental institutions. For those mothers who were generally supportive of vaccination, official sources were generally credible. For example, Manon explains, “It’s certain that when it’s from government sources I know it’s reliable, but when it’s non-governmental sources, I am always cautious about what is written” (Manon, interview). Mothers with an academic background in humanities and social sciences tended to use their academic credentials to challenge the official norm and have criticized the information

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provided by official institutions. They were the most vaccine-hesitant participants. In addition, informational reflexivity can also reveal the awareness of the role of the Internet in decision-making. Most mothers mentioned that the role of information was ultimately of little importance because they sought information to support their decision or justify their choice. For example, Elizabeth mentions this aspect as follows: “[...] it probably influences, but not in the way, for example, of “well since I read that, I decided that”, [...]. I will probably read more things [...], that I know will be in my opinion, you know, to strengthen me, to make me say, “oh yes, I made a good choice”.” (Elizabeth, interview) However, Annabelle explains that the Internet can influence choice, with the information found supporting an opinion: “[...] a lot of people [...] say “I don’t follow the schedule, and I select my vaccines”. It influenced me a lot when I read that. For me, it makes sense to choose vaccines that you agree with, and choose when you want to give them ...” (Annabelle, interview) The identification of the mechanisms that determine information credibility cannot be understood without taking into account the informational reflexivity that mothers exert on the information consulted. It highlights the importance of training mothers to trust or judge information. 2.5. Conclusion The complexity of vaccine hesitancy can be explained by the heterogeneity of the profiles of hesitant mothers. Indeed, there are many reasons for vaccine hesitancy and it is difficult to establish a unique profile of the “hesitant mother”. In this chapter, vaccine hesitancy has been linked to a parental approach that, through informed choice, values maternal empowerment. The concept of empowerment has been the subject of many publications, which can be understood as both a process and a result [NIN 95, OUE 00, ZIM 05]. According to Ninac, who considers empowerment as a process, it is the increase of the capacity to choose, decide and act. The increase of these capabilities should be articulated

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around four components [NIN 95]. First, participation in organizations [NIN 95]: in the age of Web 2.0, organizations can now be reached through groups on the Internet. For mothers, joining Internet groups can be part of this willingness to interact with peers in order to have an active approach to health decisions and the will to make informed choices. In addition, Ninac indicates the importance of awareness in the empowerment process. In this chapter, awareness of the importance of health norms for child care can be understood as critical awareness. From this perspective, in most cases, this is reflected in mistrust of government information and expert knowledge. It appears, moreover, that questions start during pregnancy, for example, by questioning the proposed screening tests [DUB 16]. Therefore, vaccine hesitancy is a continuum of the questioning of child health care norms. Second, Ninac stresses the importance of acquiring technological skills in order to be able to take action [NIN 95]. Through the informational habitus, technical skills related to information retrieval strategies and the various mechanisms put in place to evaluate information credibility have been identified. Although the Google search engine is preferred, it is interesting to note that for specific questions, some participants turn to their social media groups for information retrieval. Therefore, the question of trusting information on the Internet can be a challenge for mothers who want to make the best decision for their children. Some authors have already indicated that the strategies put in place by Internet users to evaluate information credibility are not adequate [EYS 08, FOG 02]. However, as Mager points out, these studies are based on an approach that perpetuates the hierarchy between expert knowledge and lay knowledge [MAG 09]. Yet, it appears that mothers have developed their own strategies for evaluating information, including how research is done. Mothers adapt their information practices according to their needs and what they wish to obtain as information. This means that it is important to consider the epistemic position of actors to understand how they determine information credibility [ADA 11, LAM 03, WYN 92]. Therefore, information practice and information validation mechanisms are guided by this premise. Added to this is the importance of “confirmation bias” when searching and evaluating information. This means that Internet users already know the type of information they want when they search the Internet [NIC 98]. Indeed, in cognitive psychology, “confirmation bias” refers to the preference for information that confirms pre-existing opinions [NIC 98]. This “confirmation bias” also affects the degree of trust in the information. In

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fact, hesitant mothers were initially suspicious of government information, but could trust a member of their networks because the information conveyed by it corresponded to a parenting approach. Finally, the fourth component is self-esteem, which Ninac summarizes as follows: “Thus, in the process of empowerment, there is a psychological progression that begins with the recognition of the legitimacy of one’s own identity and then of one’s own competence, which opens the door to the recognition of this same competence by others.” [NIN 95, p. 78] Informational reflexivity has highlighted the component of self-esteem. Indeed, it is interesting to note that hesitant mothers, by mobilizing their academic capital to evaluate information, put forward the latter to justify their ability to evaluate information. To conclude, vaccine hesitancy may, in some cases, be part of a parental approach that values informed choice. This parental approach is demanding because it essentially aims to question official standards. Therefore, in the age of Web 2.0, this approach has fostered the development of an informational habitus to be able to grasp the large amount of information. 2.6. References [ADA 11] ADAM S.A., “Sourcing the Crowd for health services improvement: the reflexive patient and ‘Share-Your-Experience’ websites”, Social Science & Medicine, no. 72, pp. 1069–1076, 2011. [AND 03] ANDREW C., “L’État et le mouvement pour la santé des femmes: un rapport complexe, ambigu et paradoxal”, in SAILLANT F., BOULIANNE M. (eds), Transformations Sociales, Genre et Santé: Perspectives Critiques et Comparatives, Presses de l’Université Laval, Quebec, 2003. [ARS 03] ARSENAULT C., Soins à mon enfant, guide pratique de soins naturels aux enfants, Le Dauphin Blanc, Loretteville, 2003. [BAK 17] BAKER S., MATTHEW R.S., MORAWSKA A., “Who uses online parenting support? A cross-sectional survey exploring australian parents’ internet use for parenting”, Journal of Child and Family Studies, vol. 26, no. 3, pp. 916–927, 2017.

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[BAL 14] BALTZ C., “Cyber, informationnelle, numérique... À nouvelles économies, nouvelles cultures”, Institut national de l’audiovisuel, available at: http:// www.ina-expert.com/e-dossier-de-l-audiovisuel-l-education-aux-cultures-de-linformation/cyber-informationnelle-numerique-a-nouvelles-economies-nouvellescultures.html, 2014. [BEA 11] BEAN S.J., “Emerging and continuing trend in vaccine opposition website content”, Vaccine, no. 29, pp. 1874–1880, 2011. [BEL 10] BELLA L., “In sickness and in health: public and private responsibility for health care from Bismarck to Obama”, in HARRIS R., WATHEN N., WYATT S. (eds), Configuring Health Consumers: Health Work and the Imperative of Personnal Responsability, Houndmills, Basingstoke, Hampshire, New York, Health, Technology and Society, 2010. [BET 10] BETSCH C., RENKEWITZ F., BETSCH T. et al., “The influence of vaccinecritical website on perceiving vaccination risks”, Journal of Health Psychology, vol. 3, no. 15, pp. 446–455, 2010. [BOU 80] BOURDIEU P., Le Sens Pratique, Éditions de Minuit, Paris, 1980. [BOU 15] BOULIANNE N., AUDET D., OUAKKI M. et al., Enquête sur la couverture vaccinale des enfants de 1 an et 2 ans au Québec en 2014, Study, Institut national de santé publique du Québec, 2015. [BUR 06] BURTON-JEANGROS C., “Transformations des compétences familiales dans la prise en charge de la santé: entre dépendance et autonomie des mères face aux experts”, Union Nationale des Associations Familiales, vol. 3, no. 1, pp. 16–25, 2006. [BUS 01] BUSKENS P., “The impossibility of ‘Natural Parenting’ for modern mothers on social structure and the formation of habit”, Journal of the Association for Research on Mothering, vol. 1, no. 3, pp. 75–86, 2001. [CAR 07] CAROLAN M., “Health literacy and the information needs and dilemmas of first-time mothers over 35 Years”, Journal of Clinical Nursing, vol. 6, no. 16, pp. 1162–1172, 2007. [COT 04] COTTEN S.R., GUPTA S., “Characteristics of online and offline health information seekers and factors that discriminate between them”, Social Science & Medicine, vol. 9, no. 59, pp. 1795–1806, 2004. [DOR 08] DORTIER J.-F., Pierre Bourdieu, Éditions Sciences Humaines, Auxerre, 2008.

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[LEM 08] LEMIRE M., SICOTTE C., PARÉ G., “Internet use and the logics of personal empowerment in health”, Health Policy, no. 88, pp. 130–140, 2008. [LEV 12] LEV-ON A., MANIN B., “Internet: la main invisible de la délibération”, Esprit, no. 5, pp. 195–212, 2012. [LEW 06] LEWIS T., “Seeking health information on the internet: lifestyle choice or bad attack of cybercondria?”, Media Culture & Society, vol. 4, no. 28, pp. 521– 539, 2006. [MAG 09] MAGER A., “Mediated health: sociotechnical practices of providing and using online health information”, New Media & Society, vol. 7, no. 11, pp. 1123– 1142, 2009. [MAR 16] MARCOCCIA M., Analyser la communication numérique écrite, Armand Colin, Paris, 2016. [NIC 98] NICKERSON R., “Confirmation bias: a ubiquitous phenomenon in many guises”, Review of General Psychology, vol. 2, no. 2, pp. 175–220, 1998. [NIN 95] NINACS W., “Empowerment et service social: approches et enjeux”, Service Social, vol. 1, no. 44, pp. 69–93, 1995. [OUE 00] OUELLET F., RENÉ J.F., DURAND D. et al., “Intervention en soutien à l’Empowerment. Dans Naître égaux – Grandir en santé”, Nouvelles pratiques sociales, vol. 1, no. 13, pp. 85–102, 2000. [PLA 09] PLANTIN L., DANEBACK K., “Parenthood, information and support on the internet. A literature review of research on parents and professionals online”, BMC Family Practice, no. 10, p. 34, 2009. [RAP 87] RAPPAPORT J., “Terms of empowerment/exemplars of prevention: toward a theory for community psychology”, American Journal of Community Psychology, vol. 2, no. 15, pp. 121–148, 1987. [SAI 85] SAILLANT F., “ Le mouvement pour la santé des femmes”, in DUFRESNE J., DUMONT F., MARTIN Y. (eds), Traité d’anthropologie médicale. L’Institution de la santé et de la maladie, Presse de l’Université du Québec, Quebec, 1985. [SAI 03] SAILLANT F., BOULIANNE M., Transformations sociales, genre et santé: perspectives critiques et comparatives, Presses de l’Université Laval, Quebec, 2003. [SEA 11] SEARS R., The Vaccine Book: Making the Right Decision for Your Child, Little, Brown and Company, New York, 2011.

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[SID 13] SIDDIQUI M., SALMON D.A., OMER S.B., “Epidemiology of vaccine hesitancy in the United States”, Human Vaccines & Immunotherapeutics, vol. 12, no. 9, pp. 2643–2648, 2013. [SLO 17] SLOMIAN J., BRUYÈRE O., REGINSTER J.Y. et al., “The internet as a source of information used by women after childbirth to meet their need for information: a web-based survey”, Midwifery, no. 48, pp. 46–52, 2017. [SPO 10] SPOEL P., “The rhetorical work of informed choice in midwifery: situated knowledges and the negotiation of health care decisions”, in HARRIS R., WATHEN N., WYATT S. (eds), Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility, Houndmills, Basingstoke, 2010. [THO 12] THOËR C., “Les espaces d’échange en ligne consacrés à la santé”, in THOËR C., LÉVY J. (eds), Internet et Santé: Acteurs, Usages et Appropriations, Presses de l’Université du Québec, Quebec, 2012. [VIN 09] VINCENT C., “The sociology of mothering”, in APPLE M., BALL S., GANDIN L.A. (eds), The Routledge International Handbook of the Sociology of Education, Routledge, New York, 2009. [WIT 12] WITTEMAN H.O., ZIKMUND-FISHER B.J., “The defining characteristics of web 2.0 and their potential influence in the online vaccination debate”, Vaccine, vol. 25, no. 30, pp. 3734–3740, 2012. [WYN 92] WYNNE B., “Misunderstood misunderstanding: social identities and public uptake of science”, Public Understanding of Science, vol. 3, no. 1, pp. 281–304, 1992. [ZIM 05] ZIMMERMAN R.K., WOLFE R.M., FOX D.E. et al., “Vaccine criticism on the world wide web”, Journal of Medical Internet Research, vol. 2, no. 7, p. 17, 2005.

3 Trust, Information Sources and the Impact on Decision-Making: The Example of Vaccination

3.1. Introduction Despite public health efforts to make vaccination accessible to the population and to promote it, the success of vaccination programs, largely based on the trust of the population and vaccinators, remains particularly controversial. As evidenced by the experiences of many countries, such as Denmark, Japan, England and Colombia [DUB 15a, EUR 15, GRI 14], when confidence in vaccination is broken, a decrease in vaccine coverage rates may occur and rapidly result in outbreaks of vaccine-preventable diseases (VPD) [ATT 13, GAH 14, YU 16, ZIP 15]. Therefore, vaccination could be a victim of its success: fears about vaccine safety increase as population exposure to VPD decreases [HIL 06]. The term “vaccine hesitancy” [DUB 13, DUB 14, DUB 16a, KUM 16, LAR 14, LEA 11, MAC 12, ORG 12] is commonly used to refer to the part of the population that has significant doubts and fears about vaccination, leading to delays in vaccination or refusal of one, many or all recommended vaccines1 [BEN 06, GUS 08]. These hesitations are also shared by a small number of health professionals [DUB 15a, DUB 15b]. Chapter written by Ève DUBÉ and Dominique GAGNON. 1 Some countries, such as France, have vaccine mandates for some childhood vaccines. Other countries, such as the United States, have introduced mandatory vaccination policies for school entry. It is possible for parents to be exempt from mandatory vaccination for medical reasons or, in some contexts, religious and philosophical reasons. In Canada, vaccination is not mandatory, but three provinces require proof of vaccination on school entry. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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Vaccine hesitancy is receiving media attention with each new outbreak of vaccine preventable disease (VPD). Indeed, it is a “wicked problem”2 of communication for public health authorities. There is no consensus on the effect of media exposure – through popular culture, news reading and social networking – on vaccine hesitancy or on the communication strategies that the public health authorities should use to address public concerns and fears about vaccines. The purpose of this chapter is to discuss the role of information and trust in vaccine decision-making information sources. The role of public health authorities and the challenges of communication to promote vaccination will also be addressed. Our findings are based on a narrative review of the literature resulting from several disciplinary fields (medicine, psychology, sociology, anthropology, communication and journalism). Our discussion is also supported by the results of two research projects conducted in Quebec, at the request of the Quebec Department of Health and Social Services. The first study that we discuss is based on a postal survey that aimed to estimate the vaccine coverage of Quebec children, for which a specific component was used to describe parents’ attitudes and beliefs about vaccination [DUB 16b]. The results of this study highlight the importance of trust in information sources in vaccine decision-making. The second study presents findings from a media monitoring of the content in both traditional media and Quebec websites regarding the human papillomavirus (HPV) vaccine [VIV 17]. The results of this study illustrate the effect of information circulating in the news on vaccine decision-making. 3.2. Vaccination: a complex decision influenced by trust Making the decision to vaccinate a child or not is complex, and several individual, organizational, sociocultural and sociodemographic factors are involved [DUB 13, OGI 08]. Parents who refuse vaccination do so for a variety of reasons, but lack of trust in science and institutions is usually a determining factor [BRO 10, LAR 14, MES 15a, PER 15, YAQ 14]. In its recommendations adopted in 2014, the World Health Organization’s (WHO) Working Group on Vaccine Hesitancy stated that confidence was one of the

2 Wicked problems are inherently impossible or very difficult to solve because the solutions to counter them depend on the definition and the presumed causes of the problem, which are uncertain [BRO 10].

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three main determinants of vaccine hesitancy, along with complacency3 and convenience [MAC 15]. In countries where access to health services is not a significant barrier to vaccination, attitudes and beliefs of groups targeted by vaccination programs are the main factors influencing vaccine coverage [LEA 11]. A questionnaire study including 65,819 people in 67 countries showed that overall attitudes toward vaccination were positive, although there was a considerable variability among participating countries and regions [LAR 16]. In contrast to other health behaviors, where higher socioeconomic status is associated with better compliance with recommendations, participants from countries with higher levels of education and adequate access to health services experienced less favorable attitudes toward vaccination [LAR 16]. However, it should be noted that vaccine hesitancy is not a new phenomenon. From the first vaccination campaigns against smallpox in the 19th Century, the usefulness of vaccination has been questioned [DUB 15a]. Since then, however, several changes have accentuated this phenomenon, such as the increasing number of vaccines included in vaccination programs, the rapid dissemination of negative information about vaccination via the Internet and social media, as well as a decreased trust in the legitimacy of science and institutions. Indeed, several events have contributed to a certain “trust crisis” toward public health policies. This is due to poorly managed public health crises that have undermined public confidence (e.g. management of bovine spongiform encephalopathy [“mad cow”] or that of tainted blood [CAL 01]). More specifically, in vaccination, distrust of the pharmaceutical industry, the perceived inability of regulatory agencies to act in the interest of the population and the constant erosion of deference to medical experts and health are frequently invoked [ATT 17, CUM 14]. In both Europe and the United States, studies or literature reviews have shown a relationship between trust in wider social structures and individual decisions to vaccinate [MES 15b, YAQ 14]. In a secondary analysis of data drawn from a representative sample of the American population, Mesch and Schwirian, American professors of sociology, demonstrated that trust in government and health organizations predicted the acceptance of the pandemic influenza A (H1N1) vaccination [MES 15b].

3 The fact of not perceiving vaccines as necessary, particularly because one does not consider oneself to be at risk of contracting a VPD.

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In this context, it is not only a matter of trust in the efficacy and safety of vaccines, but also trust in health professionals who recommend vaccination, trust in the health services in which vaccines are administered, trust in the surveillance system that ensures the safety of vaccines and trust in the expert committees and politicians that govern vaccination programs. This “trust crisis” is partly due to the circulation of rumors or false information in the media. 3.3. Vaccine hesitancy and trust toward information Vaccination decisions are strongly influenced by the public’s trust in information about vaccinations [MIS 12]. This trust in information usually depends on trust in the information sources. In general, the majority of the population consults doctors, nurses and other health professionals for health issues. Moreover, for most parents, the health professionals they consult are the most trustworthy source to obtain information on vaccination [COO 08, FRE 11, GLA 13, GRE 17, SAL 05]. Parents who receive information from their doctor seem less vaccine-hesitant than those who receive information from other sources [DEM 11, GLA 13, KEM 11, KLE 09, NAV 15, WU 08]. One of the main reasons for hesitant parents to ultimately accept vaccination is reassurance by and trust in the recommendations of health professionals [GUS 08]. Although parents may trust the professional caring for their children for most health issues, they may not trust the information this professional gives them about vaccines. As mentioned above, one of the characteristic aspects of vaccine hesitancy lies in the distrust of the population toward sources from the medical field and health professionals. The lack of trust among vaccine-hesitant parents is often perceived as the lack of nuance in the information provided by health professionals: these parents consider the information to be too “favorable” to vaccination and not sufficiently detailing the risks associated with vaccination [AUS 10, DUB 15c, HAR 13]. Trust in the source of information also influences the information retrieval process [HOU 10]. Indeed, dissatisfaction or distrust of a particular source of information may motivate vaccine-hesitant people to seek information from other sources, such as other parents, alternative health professionals or the Internet, as illustrated by a study of American parents [JON 12]. Another study shows that parents who intentionally delayed their children’s vaccination had heard

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or read unfavorable information about vaccination [SMI 10]. The results of the study conducted on Canadian parents of young children in 2016 by Dubé et al. indicate that parents who had sought a lot of information about vaccination and who felt that their role was to be critical of vaccines were less likely to vaccinate their children than those who did not seek information about vaccines [DUB 16c]. In addition, vaccine-hesitant parents are more likely to be dissatisfied with both their consultations with health professionals and the vaccination information they received during these consultations [BRO 10]. Recent studies conducted in Quebec indicate that children of parents who did not trust the information provided by their doctor or nurse were more likely to have an incomplete vaccination status [DUB 16b]. Health professionals play an important role in maintaining trust in vaccination. However, attitudes of parents toward vaccination are not only shaped by the information provided by health professionals, but also by various other sources that parents also trust or might trust even more. Several studies carried out in different contexts and with different population groups have shown that there is an important link between the sources of vaccination information used and vaccine acceptability [BET 12a, CON 12, NOU 10, STO 13]. These studies indicate that the media play an important role in the phenomenon of vaccine hesitancy. We will address this in section 3.3.1. 3.3.1. Quebec parents’ trust in the information provided about their children’s vaccination Since 2006, postal surveys have been conducted every two years in Quebec to estimate vaccine coverage for one and two year-old children (“Enquête sur la couverture vaccinale des enfants de un an et deux ans”). These are cross-sectional descriptive studies conducted with parents of a sample of children selected from the Fichier d’Inscription des Personnes Assurées of the Régie de l’assurance maladie du Québec. Two cohorts of 1,000 children each are surveyed: a first cohort of one-year-old children and one of two-year-old children. Since the 2014 publication, the study has also been collecting parental attitudes and beliefs about vaccination. In fact, estimating vaccine coverage alone does not make it possible to capture vaccine hesitancy, since parents may be hesitant, while continuing to follow vaccine recommendations. To collect parents’ opinions on vaccination, open

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and closed-ended questions measured the level of trust in different sources of information on vaccination. In addition to a descriptive analysis of the results, subsequent analyses were conducted to determine the relationship between attitudinal questions and the child’s vaccination status as well as the percentage of days being under-immunized. The results of the 2014 survey [DUB 16b] indicate that health professionals were the main source of information to help parents make a decision about their children’s vaccination (based on responses to the open-ended question: “Which persons or other sources of information have helped you the most in making a decision concerning your child’s vaccination?”). The Internet ranked fourth among the sources of information mentioned by parents. Children of parents who mentioned the Internet as one of their sources of information were less well vaccinated: 62% had a complete vaccination status compared to 80% of children whose parents reported the use of sources other than the Internet. Half of the parents who mentioned the Internet as the main source of information that helped them the most in their vaccination decision also reported having already hesitated to vaccinate their children. In general, the sources of information on vaccination most trusted by parents were the sources related to the medical field or health institutions. Parents’ children trusting (completely or partially) these sources of information had a higher complete vaccination status and a lower percentage of days under-immunized than the parents’ children who did not trust them. Moreover, in multivariate analysis, not trusting the information received from a doctor (family doctor, pediatrician, etc.) or from a nurse and not feeling sufficiently informed about the vaccination were among the variables associated with both the incomplete vaccination status of the child and the cumulative ≥ 20% days under-immunized. These Quebec data indicate that children of parents who do not trust the information provided by their doctor or nurse may be at a greater risk of having an incomplete vaccination status. As previously mentioned, the need for a parent to feel sufficiently informed and the trust he/she has in the sources of information consulted are two important factors in vaccine decision-making.

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3.4. Media, information and vaccine hesitancy 3.4.1. Media and media controversies surrounding vaccination It is recognized that vaccine controversies that are reported in the media have a negative impact on vaccine acceptance. For example, the article published in 1998 by Wakefield in the medical journal The Lancet evoking a possible link between the MMR vaccine (measles, mumps and rubella) and autism, and taken up by the media, had aroused at that time a panic about the possible adverse events following immunization (AEFIs). Since then, despite numerous scientific publications demonstrating the absence of such a link (and the fact that the ethical and scientific failings of this study have been unveiled), the fear of autism associated with this vaccine has still been a source of concern for parents [BRO 12, FRE 10]. One possible explanation for the influence of the media on vaccine hesitancy is the “two-sided news messages”. It is expressed in situations where evidence for vaccination from experts (academic researchers or health professionals) is presented on an equal footing as arguments against vaccination that are not scientifically based, coming from people with no scientific or professional legitimacy. The media could also negatively influence public opinion, suggesting that there are more opponents to vaccination than in reality or that vaccine refusal has no negative effects, both at the individual and public health levels. Media coverage around celebrities (such as American presenter Jenny McCarthy or Canadian actor Jim Carrey) who refuse vaccination or question vaccine safety also has a detrimental effect on the acceptability of vaccination by the population [MNO 12]. 3.4.2. Media controversy surrounding human papillomavirus vaccination in Quebec In Quebec, a school-based vaccination program against human papillomavirus (HPV) has been offered to girls since 2008 and to boys since 2016. The media context in which the HPV school-based vaccination program was implemented is unique; the decision to offer this school-based vaccination program has been the subject of some public controversies, and media coverage has sometimes been negative. To describe public opinion

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surrounding the HPV school-based vaccination program in Quebec, a media monitoring study of French and Canadian content covered by both traditional media (articles, press releases, and radio and television programs) and the Internet (sites and targeted Facebook pages) on HPV vaccination was conducted from April 2015 to June 2016 [VIV 17]. During this period, a media controversy started with the publication of an opinion letter entitled “Appel urgent à un moratoire sur la vaccination contre les VPH” [HPV Vaccination: Urgent Call for a Moratorium]4 in a Quebec daily newspaper. The authors of this text, researchers at Concordia University and McGill University, questioned the safety of the HPV vaccine. This letter coincided with the time of the school year when parents of Grade 4 girls were invited to provide their consent for HPV vaccination. The publication of this opinion letter has been shared approximately 25,000 times on the social networking platform Facebook. After three days, a group of health professionals published a favorable response to vaccination in another Quebec daily newspaper in order to question the arguments raised by the researchers. This post has been shared on Facebook less than 2,000 times. Other publications followed between various actors and the authors of the opinion letter recidivated with an article titled “Contre la loi du silence” [Against the Law of Silence]5 alleging the impossibility of speaking against vaccination. This type of debate between “experts” identified during the media monitoring can increase vaccine hesitancy among the population that no longer knows whom to trust [PEP 16]. In such a context, it is not surprising that the contradictory information circulating can fuel skepticism and distrust of vaccination. In fact, a subsequent Quebec study, conducted by interviewing various stakeholders involved in the HPV school-based vaccination program (including parents of Grade 4 students), identified the negative impact of HPV information circulating on the Internet and on social media as one of the main barriers to the HPV school-based vaccination program [CLÉ 17].

4 Authors’ translation. 5 Authors’ translation.

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3.4.3. Vaccination information research: impact on vaccine decision-making The arrival of the Internet and social media has changed the way information is disseminated regarding public health. These sources of information have become important tools in the retrieval of health information, so much so that they have an impact on health decisions. While the dissemination of information via these sources can have a positive impact on health behaviors through the democratized access to specialized information on a particular health issue, false health information circulating on the Internet can have a negative impact on decision-making. In the field of health, as in other areas, one of the major issues, especially with the Internet, remains the quality and reliability of the information circulating there [CUL 06, EYS 02, ROM 12]. The Internet blurs the boundaries between different types of information and expertise, and can give an apparent credibility to content judged as not being valid by health authorities [BET 12a, BET 12b]. With the Internet and social media, the dissemination and production of health information is beyond the reach of the medical sector and the government. These sources of information would contribute to the legitimacy and credibility of experience-based health information in the same way as that of evidence-based scientific information [EYS 07, WAT 08]. In addition, these means of information provide a type of information that seems to be unanimously perceived as trustworthy: the experience of others who share our situation. This new form of expertise, based on experience, ensures the credibility of information, because the producers of this content are perceived as having no hidden agenda and having no hidden reason to produce information [HIL 07]. For example, in the case of vaccination, the Internet provides access to many parents’ testimonials describing AEFIs, most of them with no clear causal association with vaccination from a medical standpoint [HAA 12]. Indeed, anti-vaccination discourses are fueled by widely shared stories of parents having observed the occurrence of a disease in their child within a short period following vaccination. Despite being anecdotal, these stories can have a significant impact on other parents reading them. This impact may be explained in part by the empathy that one parent may feel toward the distress of another parent who believes he/she has voluntarily caused – by accepting vaccination – irreparable harm to their child.

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Studies that have specifically analyzed the vaccination content on websites or social media platforms indicate that the quality of information was highly variable [BEA 11, DAV 02, KAT 10, KAT 12, KEE 10, SCU 10, WIT 12, WOL 02, ZIM 05]. A large number of these websites and social media channels presented inaccurate information on vaccines and a very distrustful discourse toward medical authorities. The discourse on these websites values “enlightened” decision-making by “informed” actors, while parents blindly following the recommendations of experts and official institutions (doctors, government, science) are presented in a negative way [BAU 12, HOB 07, LÖF 05, NAV 15, OME 09]. Moreover, sharing on social media also promotes the dissemination of information as well as the exposure of Internet users to it [MIT 13]. According to research conducted by Zimmerman, a professor of family medicine at the University of Pittsburgh in the United States, antivaccination movements might have taken advantage of the Internet to spread their message to parents seeking information on vaccination [ZIM 05]. Individuals who are unfavorable to vaccination are particularly present in news forums, and their active participation is reflected in overrepresentation of anti-vaccine content [PER 13]. Finally, studies in psychology and communication, conducted in a controlled experimental context and based on either fictitious websites or hypothetical vaccines, also indicate that consulting anti-vaccine websites and reading testimonials about AEFIs increased the perceptions of risk in vaccination among Internet users [BET 10, BET 13, NAN 12]. The results of one of these studies demonstrated that messages providing information on the risks of AEFIs decreased the perceived risk of vaccination in participants, while messages including such information on AEFIs increased the perceived risk of vaccination in participants [BET 13]. 3.5. Challenges and issues of public health communication to increase vaccine coverage In the context of distrust of institutions and government, the wide accessibility of information poses a major communication challenge for the promoters of vaccination programs. In terms of risk communication, the traditional public health approaches are, in most cases, using a top-down

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perspective. Information frequently flows unidirectionally toward the population, without taking into consideration the knowledge and experiences of individuals. Public health institutions use their Internet portal as a device to communicate information to the general public. This approach can lead to “data dumping” or “one-size-fits-all” communications that are insufficient to increase trust and convince people to adopt health behaviors [DUB 15d]. In addition, most public health interventions about vaccination are based on the observation that vaccine hesitancy results from a lack of knowledge about vaccines (the “empty vessel” model or knowledge-deficit approach) [HOB 03, KAH 13]. The “empty vessel” model assumes that if parents had access to specific and scientifically accurate information about vaccines’ safety and efficacy, they would definitely embrace the “miracle of vaccination” [HEN 97]. The failure of this type of intervention would then be explained because the population lacks scientific knowledge or does not understand scientific information. It is understood that this type of intervention does not take into account the complex nature of vaccine decision-making where information, while essential, is not sufficient in itself to motivate action [HOB 03, STR 99]. The majority of studies evaluating these types of interventions concluded that these interventions were widely ineffective in countering vaccine hesitancy [DUB 15d]. Human nature is complex: individuals have values and priorities that may be at odds with public health recommendations [DRI 13, MAS 14]. When individuals encounter information that contradicts their values, they may feel threatened in their identity, reject this new information and paradoxically become more strongly convinced that their initial beliefs are valid [BED 14, BLO 14, DOW 08, NIC 12, NYH 14, NYH 15, SCH 16]. This paradox, called cultural cognition bias, is well demonstrated, for political, environmental and health issues, including vaccination [KAH 10]. Risk perception can also influence vaccine decision-making in two distinct ways: the perceived risks of vaccine-preventable diseases can increase vaccine acceptability, and the perceived risks of vaccination can contribute to vaccine refusal [BRE 07, LAG 14, OFF 14, TOU 14]. Social science research has also shown that risk perception is based on experiences (such as those experienced with other vaccines or with healthcare services) much more than on factual information [CAS 07, HOB 03]. Individuals perceive vaccine risks differently from experts: risks are not quantified, but present or

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absent [DRI 15, REY 12]. One of the main determinants of risk acceptability is trust. Health decisions would therefore be based more on how individuals “feel” about a series of facts than the facts themselves, even if they fully understand them [PET 15, SLO 87]. For example, the facts presented in terms of frequency (“one in 10 children will get fever after receiving the vaccine”) increase the perception of the risk associated with vaccination, since individuals imagine the child more easily compared to the same information presented in terms of probability (“10% of children will have a fever after receiving the vaccine”). In addition, many individuals, even from developed countries, have low numeracy and are unable to interpret mathematical concepts such as probabilities [PET 08]. In this sense, the use of risk communication principles in vaccination could provide a useful framework for responding to vaccine controversies. According to the National Research Council, risk communication is “an interactive process of exchanging information and opinion among individuals, groups, and institutions that raises the level of understanding of relevant issues or actions and satisfies those involved so that they are adequately informed within the limits of available knowledge” [NAT 89]. Both communicating benefits and risks for informed decision-making and building trust are important elements of this type of communication. Indeed, when health professionals communicate effectively about the benefits and risks of vaccines to parents, parents make a decision with greater confidence [WHE 13]. However, health professionals report increasing challenges in building trust relationships with their patients, through which they could dispel fears and reassure, for example, hesitant parents [DUB 16a]. 3.6. Conclusion Vaccination is a complex health behavior, and many determinants influence vaccine decisions. In Quebec, as elsewhere in the world, many parents are vaccine-hesitant, which can lead to delays in vaccination or refusal of some or all recommended vaccines. As discussed in this chapter, knowledge is important in vaccine decision-making, but it is insufficient to change risk perception toward vaccines and decrease vaccine hesitancy.

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This narrative review of the literature shows that there is a link between the sources of information consulted, the trust given to these sources and the acceptability of vaccines. Despite the assumption that vaccine hesitancy is due to a lack of knowledge, we have illustrated that parental lack of trust in both vaccine information and sources of information is the main reason for the reluctance of parents to vaccinate their children. This lack of trust can be directed at health professionals and health institutions or pharmaceutical companies. Although health professionals remain a reliable source of information on vaccination for a majority of parents, they are no longer the only holders of information on this subject. We have illustrated in this chapter that parents are more inclined to consult other sources of information, such as the Internet, when they are undecided about vaccination. These parents may encounter a large array of information from different sources whose quality, relevance and reliability vary widely. As access to health information has changed over time, new media now have significant power to influence knowledge and attitudes and to raise awareness about health issues such as vaccination. Indeed, this chapter indicates that the Internet and social media give legitimacy and credibility to the information coming from narratives of personal experience. This poses new challenges to public health authorities who, in this context, are called upon to change their approaches for communicating information about vaccination. To ensure confidence in vaccination programs, public health authorities must go beyond the traditional “empty vessel” approach to implement strategies aimed at building and maintaining public trust. 3.7. References [ATT 13] ATTWELL J.E., VAN OTTERLOO J., ZIPPRICH J. et al., “Nonmedical vaccine exemptions and pertussis in California, 2010”, Pediatrics, vol. 132, no. 4, pp. 624–630, 2013. [ATT 17] ATTWELL K., LEASK J., MEYER S.B. et al., “Vaccine rejecting parents engagement with expert systems that inform vaccination programs”, Journal of Bioethical Inquiry, vol. 14, no. 1, pp. 65–76, 2017.

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[AUS 10] AUSTVOLL-DAHLGREN A., HELSETH S., “What informs parents’ decisionmaking about childhood vaccinations?”, Journal of Advanced Nursing, vol. 66, no. 11, pp. 2421–2430, 2010. [BAU 12] BAUMANN S.L., “What’s wrong with the concept of self-management?”, Nursing Science Quarterly, vol. 25, no. 4, pp. 362–363, 2012. [BEA 11] BEAN S.J., “Emerging and continuing trends in vaccine opposition website content”, Vaccine, vol. 29, no. 10, pp. 1874–1880, 2011. [BED 14] BEDFORD H., “Pro-vaccine messages may be counterproductive among vaccine-hesitant parents”, Evidence-Based Medicine, vol. 19, no. 6, p. 219, 2014. [BEN 06] BENIN A.L., WISLER-SCHER D.J., COLSON E. et al., “Qualitative analysis of mothers’ decision-making about vaccines for infants: the importance of trust”, Pediatrics, vol. 117, no. 5, pp. 1532–1541, 2006. [BET 10] BETSCH C., RENKEWITZ F., BETSCH T. et al., “The influence of vaccinecritical websites on perceiving vaccination risks”, Journal of Health Psychology, vol. 15, no. 3, pp. 446–455, 2010. [BET 12a] BETSCH C., SACHSE K., “Dr. Jekyll or Mr. Hyde? (How) the internet influences vaccination decisions: recent evidence and tentative guidelines for online vaccine communication”, Vaccine, vol. 30, no. 25, pp. 3723–3726, 2012. [BET 12b] BETSCH C., BREWER N.T., BROCARD P. et al., “Opportunities and challenges of web 2.0 for vaccination decisions”, Vaccine, vol. 30, no. 25, pp. 3727–3733, 2012. [BET 13] BETSCH C., RENKEWITZ F., HAASE N., “Effect of narrative reports about vaccine adverse events and bias-awareness disclaimers on vaccine decisions: a simulation of an online patient social network”, Medical Decision Making, vol. 33, no. 1, pp. 14–25, 2013. [BLO 14] BLOOM B.R., MARCUSE E., MNOOKIN S., “Addressing vaccine hesitancy”, Science, vol. 344, no. 6182, p. 339, 2014. [BRE 07] BREWER N.T., CHAPMAN G.B., GIBBONS F.X. et al., “Meta-analysis of the relationship between risk perception and health behavior: the example of vaccination”, Health Psychology, vol. 26, no. 2, pp. 136–145, 2007. [BRO 10] BROWN K.F., KROLL J.S., HUDSON M.J. et al., “Factors underlying parental decisions about combination childhood vaccinations including MMR: a systematic review”, Vaccine, vol. 28, no. 26, pp. 4235–4248, 2010.

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[BRO 12] BROWN K.F., LONG S.J., RAMSAY M. et al., “U.K. parents’ decisionmaking about measles-mumps-rubella (MMR) vaccine 10 years after the MMR-autism controversy: a qualitative analysis”, Vaccine, vol. 30, no. 10, pp. 1855–1864, 2012. [BRO 10] BROWN V., HARRIS J., RUSSEL J., Tackling Wicked Problems: Through the Transdisciplinary Imagination, Routledge, New York, 2010. [CAL 01] CALLON M., LASCOUMES P., BARTHE Y., Agir dans un monde incertain, essai sur la démocratie technique, Le Seuil, Paris, 2001. [CAS 07] CASIDAY R.E., “Children’s health and the social theory of risk: Insights from the British measles, mumps and rubella (MMR) controversy”, Social Science & Medicine, vol. 65, no. 5, pp. 1059–1070, 2007. [CLÉ 17] CLÉMENT P., GAGNON D., DUBÉ E., Stratégies de promotion de la vaccination contre les virus du papillome humain (VPH) dans le cadre du programme de vaccination scolaire : évaluation des facteurs favorables et des barrières, Report, Institut national de santé publique du Québec, 2017. [CON 12] CONNOLLY T., REB J., “Toward interactive, internet-based decision aid for vaccination decisions: better information alone is not enough”, Vaccine, vol. 30, no. 25, pp. 3813–3818, 2012. [COO 08] COOPER L., LARSON H.J., KATZ S., “Protecting public trust in immunization”, Pediatrics, vol. 122, no. 1, pp. 149–153, 2008. [CUL 06] CULLEN R., Health Information on the internet: A Study of Providers, Quality, and Users, Praeger Publishers, Westport, 2006. [CUM 14] CUMMINGS L., “The ‘trust’ heuristic: arguments from authority in public health”, Health Communication, vol. 29, no. 10, pp. 1043–1056, 2014. [DAV 02] DAVIES P., CHAPMAN S., LEASK J., “Antivaccination activists on the World Wide Web”, Archives of Disease in Childhood, vol. 87, no. 1, pp. 22–25, 2002. [DEM 11] DEMPSEY A.F., SCHAFFER S., SINGER D. et al., “Alternative vaccination schedule preferences among parents of young children”, Pediatrics, vol. 128, no. 5, pp. 848–856, 2011. [DOW 08] DOWNS J.S., DE BRUIN W.B., FISCHHOFF B., “Parents’ vaccination comprehension and decisions”, Vaccine, vol. 26, no. 12, pp. 1595–1607, 2008. [DRI 13] DRIEDGER S.M., COOPER E., JARDINE C. et al., “Communicating risk to aboriginal peoples: first nations and Metis responses to H1N1 risk messages”, PLOS ONE, vol. 8, no. 8, p. 71106, 2013.

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[DRI 15] DRIEDGER S.M., MAIER R., FURGAL C. et al., “Factors influencing H1N1 vaccine behavior among Manitoba Metis in Canada: a qualitative study”, BMC Public Health, vol. 15, p. 128, 2015. [DUB 13] DUBÉ E., LABERGE C., GUAY M. et al., “Vaccine hesitancy: an overview”, Human Vaccines & Immunotherapeutics, vol. 9, no. 8, pp. 1763–1773, 2013. [DUB 14] DUBÉ E., GAGNON D., NICKELS E. et al., “Mapping vaccine hesitancy– country-specific characteristics of a global phenomenon”, Vaccine, vol. 32, no. 49, pp. 6649–6654, 2014. [DUB 15a] DUBÉ E., VIVION M., MACDONALD N.E., “Vaccine hesitancy, vaccine refusal and the anti-vaccine movement: influence, impact and implications”, Expert Review of Vaccines, vol. 14, no. 1, pp. 99–117, 2015. [DUB 15b] DUBÉ E., GAGNON D., ZHOU Z. et al., Enquête québécoise sur la vaccination contre la grippe saisonnière et le pneumocoque, Survey, Institut national de santé publique du Québec, 2015. [DUB 15c] DUBÉ E., VIVION M., SAUVAGEAU C. et al., “‘Nature does things well, why should we interfere?: vaccine hesitancy among mothers”, Qualitative Health Research, vol. 26, no. 3, pp. 411–425, 2015. [DUB 15d] DUBÉ E., GAGNON D., MACDONALD N.E. et al., “Strategies intended to address vaccine hesitancy: Review of published reviews”, Vaccine, vol. 33, no. 34, pp. 4191–4203, 2015. [DUB 16a] DUBÉ E., GAGNON D., OUAKKI M. et al., “Understanding vaccine hesitancy in Canada: results of a consultation study by the Canadian Immunization Research Network”, PLOS ONE, vol. 11, no. 6, p. e0156118, 2016. [DUB 16b] DUBÉ E., GAGNON D., OUAKKI M., Attitudes et croyances des parents québécois sur la vaccination – Enquête sur la couverture vaccinale des enfants de 1 an et 2 ans au Québec en 2014, Report, Institut national de santé publique du Québec, 2016. [DUB 16c] DUBÉ E., BETTINGER J.A., FISHER W. et al., “Vaccine hesitancy in Canada: results of an online survey”, 12th Canadian Immunization Conference, Ottawa, Canada, 6–8 December 2016. [EUR 15] EUROPEAN MEDICINES AGENCY, “HPV vaccines: EMA confirms evidence does not support that they cause CRPS or POTS”, available at: http://www. ema.europa.eu/docs/en_GB/document_library/Press_release/2015/11/WC500196 762.pdf, 2015.

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[EYS 02] EYSENBACH G., POWELL J., KUSS O. et al., “Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review”, Journal of the American Medical Association, vol. 287, no. 20, pp. 2691–2700, 2002. [EYS 07] EYSENBACH G., “From intermediation to disintermediation and apomediation: new models for consumers to access and assess the credibility of health information in the age of web 2.0”, Studies in Health Technology and Informatics, vol. 129, pt. 1, pp. 162–166, 2007. [FRE 10] FREED G.L., CLARK S.J., BUTCHART A.T. et al., “Parental vaccine safety concerns in 2009”, Pediatrics, vol. 125, no. 4, pp. 654–659, 2010. [FRE 11] FREED G.L., CLARK S.J., BUTCHART A.T. et al., “Sources and perceived credibility of vaccine-safety information for parents”, Pediatrics, vol. 127, suppl. 1, pp. 107–112, 2011. [GAH 14] GAHR P., DEVRIES A.S., WALLACE G. et al., “An outbreak of measles in an undervaccinated community”, Pediatrics, vol. 134, no. 1, pp. 220–228, 2014. [GLA 13] GLANZ J.M., WAGNER N.M., NARWANEY K.J. et al., “A mixed methods study of parental vaccine decision making and parent-provider trust”, Academic Pediatrics, vol. 13, no. 5, pp. 481–488, 2013. [GRE 17] GREENBERG J., DUBÉ E., DRIEDGER S.M, “Vaccine hesitancy: in search of the risk communication comfort zone”, PLOS Currents, vol. 9, 2017. [GRI 14] GRILLO-ARDILA C.F., “El carmen de bolívar: a lesson not to be forgotten”, Revista Colombiana De Obstetricia Y Ginecologia, vol. 65, no. 3, pp. 202–205, 2014. [GUS 08] GUST D., DARLING N., KENNEDY A. et al., “Parents with doubts about vaccines: which vaccines and reasons why”, Pediatrics, vol. 122, no. 4, pp. 718–725, 2008. [HAA 12] HAASE N., BETSCH C., “Parents trust other parents: lay vaccination narratives on the Web may create doubt about vaccination safety”, Medical Decision Making, vol. 32, no. 4, p. 645, 2012. [HAR 13] HARMSEN I.A., MOLLEMA L., RUITER R.A. et al., “Why parents refuse childhood vaccination : a qualitative study using online focus groups”, BMC Public Health, vol. 13, p. 1183, 2013. [HEN 97] HENDERSON D.A., “The miracle of vaccination”, Notes and Records of the Royal Society of London, vol. 51, no. 2, pp. 235–245, 1997.

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[MES 15b] MESCH G.S., SCHWIRIAN K.P., “Social and political determinants of vaccine hesitancy: Lessons learned from the H1N1 pandemic of 2009–2010”, American Journal of Infection Control, vol. 43, no. 11, pp. 1161–1165, 2015. [MIS 12] MISHRA A., GRAHAM J.E., “Risk, choice and the ‘girl vaccine’: Unpacking human papillomavirus (HPV) immunisation”, Health, Risk & Society, vol. 14, no. 1, pp. 57–69, 2012. [MIT 13] MITCHELL A., KILLEY J., GOTTFRIED J. et al., “The role of News on Facebook, Pew Research Center”, Pew Research Center: Journalism & Media, available at: http://www.journalism.org/2013/10/24/the-role-of-news-on-facebook, 2013. [MNO 12] MNOOKIN S., The Panic Virus: The True Story Behind the VaccineAutism Controversy, Simon & Schuster, New York, 2012. [NAN 12] NAN X., MADDEN K., “HPV vaccine information in the blogosphere: how positive and negative blogs influence vaccine-related risk perceptions, attitudes, and behavioral intentions”, Health Communication, vol. 27, no. 8, pp. 829–836, 2012. [NAT 89] NATIONAL RESEARCH COUNCIL, Improving Risk Communication, National Academy Press, Washington, 1989. [NAV 15] NAVIN M., Values and Vaccine Refusal: Hard Questions in Ethics, Epistemology and Public Health, Routledge, New York, 2015. [NIC 12] NICHOLSON M.S., LEASK J., “Lessons from an online debate about measlesmumps-rubella (MMR) immunization”, Vaccine, vol. 30, no. 25, pp. 3806–3812, 2012. [NOU 10] NOUGAIREDE A., LAGIER J.C., NINOVE L. et al., “Likely correlation between sources of information and acceptability of A/H1N1 swine-origin influenza virus vaccine in Marseille, France”, PLOS ONE, vol. 5, no. 6, p. e11292, 2010. [NYH 14] NYHAN B., REIFLER J., RICHEY S. et al., “Effective messages in vaccine promotion: a randomized trial”, Pediatrics, vol. 133, no. 4, pp. e835–842, 2014. [NYH 15] NYHAN B., REIFLER J., “Does correcting myths about the flu vaccine work? An experimental evaluation of the effects of corrective information”, Vaccine, vol. 33, no. 3, pp. 459–464, 2015. [OFF 14] OFFUTT-POWELL T.N., OJHA R.P., QUALLS-HAMPTON R. et al., “Parental risk perception and influenza vaccination of children in daycare centres”, Epidemiology & Infection, vol. 142, no. 1, pp. 134–141, 2014.

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4 Info-Communication Practices of Autistic Children’s Parents on the Internet: Trust Issues and Legitimacy

4.1. Introduction The e-health sector is an ecosystem with diverse stakeholders and issues, which “assimilates the private sector, individuals, public bodies, specialists, patients and politics” [SAL 15]. In this complex system, where patients often multiply the administrative and medical referrals, the places and roles of each evolve: the democratization of the health system with the Internet [JOU 10, MEA 10] offers the possibility of patients to be proactive and to search for information about their illness by themselves (this is the case for seven out of 10 French people [PAG 14]), or even to advise other patients, thus becoming “expert patients” [BOU 12]. In this context, we focus in particular on the Internet’s health information on autism. As Dubreuil and Hazif-Thomas [DUB 13] point out, concerning people who are “dependant or disabled”, who make up the majority of autistic patients, it is often the family who seek information to better understand the disease and manage the patients’ routine and care1. Our focus will therefore be on the patient’s entourage (“caregivers”) rather than on the patient him/herself. In our case, it is particularly the parents of the autistic child.

Chapter written by Clément DUSSARPS and Denis DUSSARPS. 1 The recent health law (Marisol Touraine) also takes into account the “caregivers”. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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In order to invest in this field more broadly later, we propose, in this first work, to identify the motivations of parents of autistic children to consult online information devices on autism (created by professionals and non-professionals), or even contribute to or create them. These elements will be treated in particular with the prism of trust: is it due to a lack of trust in practitioners, and if so, what is its origin? Does consulting online content sometimes lead to calling into question the word of health professionals? What legitimacy does the caregiver give to issues related to autism? We will begin by recalling the types of information (health and medical) that can be found on the Internet and the changing role of patients. Next, we will present the particular context of autism. Then, we will dwell on the methodological elements of this work, on which we will also discuss, in order to share with the reader, the difficulties related to the study of this field. Finally, we will present the main results of the survey, first in terms of the trust and legitimacy of patients’ family members with regard to medical professionals and then on the uses and motivations of patients to use the Internet. 4.2. Search for health information on the Internet: questioning the medical authority? Information about health has become “overflowing” [ROM 08] following the introduction of information and communication technology (ICT) to the public, professional and personal domains. In particular, the Internet offers easy access to information2 via search engines, at any time, and also allows easier information production by means of “Web 2.0” and extended communication. According to Romeyer [ROM 08], several types of health-related information coexist on the Internet: medical information, “produced by specialists and meeting the criteria and functioning of scientific public information”, and health information, “a new category of information, intended for the general public, distributed on the Internet [...] [which] escapes both the medical sector and the State”. The nature of the issuer is thus, according to Romeyer, what allows the differentiation of the following two types of information: the first is produced by specialists and is

2 We prefer to speak of a diverse and non-specific set of information (“information”) rather than of a clear and well-identified set (“a piece of information”) because of the multiplicity of information that can be found via search engines, their origins and their reliability.

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regulated by the State, and the second is produced by industrialists and companies, and would escape any control (at least before publication)3. In the same way, patients become users, readers and producers of this health information: we then add patients and relatives of patients to this second type of information. The transition from a receiver to a transmitter of information leads to a questioning (real and/or perceived) of the medical authority (and the uniqueness of sources of medical information), as attested by several studies [BOU 12, ROM 08]. This questioning is not always limited to questioning the specialist’s word but to sometimes more radical actions: Romeyer, who conducted interviews with users of the Doctissimo forum, quotes, for example, the case of a patient who changed doctors on the advice of a user, those who sought medical advice from other non-specialist users4 and so on. However, this is not systematic, and the information sought on the Internet often comes in addition to the medical information presented by the doctor following the patient [MEA 10], in particular, to better understand [PAG 14] or in part of an attempt at a diagnosis prior to the meeting with the doctor [AMS 17, THO 13]. To illustrate the changes in behaviors in terms of informationcommunication patients, we refer again to Romeyer’s study [ROM 08]: the people who go on Doctissimo are essentially patients or relatives of patients, and 98% end up there via a search engine, which seems to indicate that the majority of them want to find information on the Internet without targeting a particular website. In fact, since search engines do not classify medical and health information according to a reliability index, patients probably go to the first websites offered, which are the best referenced (such as Doctissimo or Wikipedia), but do not necessarily guarantee reliable information. They come first to seek practical advice (92%) and information on an illness (75%) and more rarely to make contact with other patients (25%). Following his study, Romeyer also states that Doctissimo users seem to have “integrated the difference between professional medical information [...] and mainstream health information” [ROM 08]. These users look for practical, free and popular information, easy access and anonymity. Physicians would then retain their place of reference regarding medical information, although 3 Although, there is the “HONCode” (Certifying Charter on Medical Information and Health), which is produced by a non-governmental organization (of Swiss origin) and certifies a certain quality of information. However, being certified is a voluntary process. 4 This does not exclude the fact that patients can become “experts” regarding their illness, due to the appropriation of a lot of information that will assimilate and explain a personal experience (everyday experience).

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some patients discuss with their doctor the information read on the Internet, “to the point of sometimes questioning their expertise”. In short, medical information is technical, not accessible to the layman and issued by doctors, while patient-actors exchange practical advice for everyday life, to promote well-being, even “parallel” methods of care (health information). Finally, we note that specialists (medical and paramedical) are not necessarily absent from the media info-communication [PAG 14], although their place is anecdotal on discussion areas like those of Doctissimo. 4.3. Trust and legitimacy: at the heart of the patient’s “actorization” We will define trust as “the belief that another individual, an organization or an institution will act in a manner compliant with what is expected of it” (Simon, 2007, quoted by Maurel and Chebbi [MAU 12]). “Trust” is a voluntary action, a “presumption that, in a situation of uncertainty, the other party will, even in the face of unforeseen circumstances, act according to rules of behavior that we find acceptable” [BID 95, p. 113]. In this study, two types of trust are mobilized: interpersonal trust (between individuals) and information trust, “based in particular on people’s perception of the quality of information (and sources of information) and its value (symbolic, business, evidence, etc.)” [MAU 12], particularly concerning information found and shared on the Internet by caregivers (parents of autistic children in our case). “Actorization”, a combination of the terms “actor” and “authorization” [CHA 12], refers to the phenomenon of the shifting patient role, who now authorizes him/herself to act. If the reasons for the patients’ actorization (or relatives of patients) are multiple, it is sometimes the lack of trust toward the specialist and/or his/her discourse, which motivates their search for health information [AMS 17], or even content production. From their readings and their productions, which often require an appropriation of complex medical knowledge, these new actors gain legitimacy or perception of legitimacy on their illness or that of their relative, especially as they experience it on a daily basis. This form of legitimacy should be characterized: the patient or loved one can develop experiential knowledge (see [PAG 14] about the “patient-knowledge” first dealt with in [MEA 10]) stemming from his/her experience, which is health information (more than medical); he/she can also rely on knowledge from various sources, which can be misunderstood or

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unreliable. Legitimacy can also depend on the professional’s gaze or the relationship with the professional: by looking for information on the Internet and discussing it with the doctor, some patients think and reinforce their “involvement in care process and [...] situate their credibility (you have to assert yourself as a serious patient). [The presentation of their approach] reinforced the legitimacy of their quest for care (do not disturb the doctor for no reason). Finally, it allowed some patients to position themselves as partners in the care process and to participate in a more informed way (ask the right questions)” [THO 13]. There is also greater patient involvement depending on the severity of the illness and/or the impact of the illness on daily life and long-term plans. This is particularly observed in the case of chronic illnesses, where the patient often plays an active role in associated care and technical actions, as well as in the issuance of priorities that are specific to him/her, sometimes being out of step with those recommended by health professionals. Yet, far from calling into question the legitimacy of the doctor (health professional), the consultation of medical information via the Web sometimes reinforces the patient–doctor relationship in terms of trust and legitimacy [HAS 07]. 4.4. The trust crisis concerning autism Romeyer [ROM 08] distinguished between medical information and health information, as the latter can be produced by non-specialists. On Doctissimo, patients or relatives of patients come to “reassure themselves, find people who suffer from the same pathology as them, discuss with ‘those who understand them the best and experience the same thing’” [ROM 08]. Meanwhile, Thoër indicates that “for the majority of patients, the goal [of information retrieval on the Internet] is not to confront the doctor but to obtain his opinion, the health professional remaining largely invested in their trust” [THO 13]. These remarks are consistent with Kivits findings [KIV 10] and an Ipsos survey from 20105. We wonder then if, in the field of autism, the analyses of the information-communication practices of patients – in our case, relatives of patients – carried out so far are similar to those carried out in the field of e-health in general. 5 “Les consequences des usages d’Internet sur les relations patients-médecins”, survey conducted for the Conseil National de l’Ordre des Médecins, April 2010, available at: http//www. conseil-national.medecin.fr/sites/default/files/sondage%20internet%20CNOM%202010_0.pdf, accessed on December 22, 2017.

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The autism sector has experienced, and still experiences today, a crisis of trust between parents and professionals possessing medical knowledge. France has been known, at various times, for being late when it came to being in line with international scientific consensus. Indeed, during the time of its discovery by Leo Kanner in 1943, autism was associated with mental pathologies and considered as a form of schizophrenia: in the field of psychiatry, children were sometimes removed from their families. From the mid-1970s to the 2000s, the work of “precursors” [ORN 73, RUT 91, WIN 98], as well as studies from the field of neurobiology and genetics, in particular, allowed for a progressive reconsideration of the etiology of autism. On the basis of these new scientific data, as well as the desire of parents’ associations to have autism recognized as a disability rather than an illness, autism gained the status of a neurodevelopmental disorder, removing it from schizophrenia and other mental disorders, while re-examining the methods of care. In France, the persistence of erroneous and unscientific theories, inspired by psychoanalysis [HAS 12, HOC 09a, HOC 09b, MEA 06], led to a highly guilt-ridden discourse for the family (“refrigerated mothers” (sic), child with autism because he/she would not have been wanted or because the mother does not look at him/her, etc.). This situation then prompted some parents to find information elsewhere. Despite the awareness of public authorities in recent years (the first “Plan Autisme” was launched in France in 2005, and the fourth will begin in 2018) and the recommendations of good practices from the HAH6, the disparity and the persistence of inappropriate support remain significant (France has been condemned several times for lack of care7), with different realities from one region to another. Some parents were then trained in other countries by specialists, thus appropriating medical knowledge, and consulted books or data via the Internet, thus promoting parallel knowledge. They became “experts” in their child’s disorder, grouped together in associations (which created the first dedicated medico-social structures) and offered training to other parents and health professionals. We then witnessed a redistribution of trust and legitimacy on issues of autism shared by parents, associations and health professionals. 6 High Authority of Health. 7 See, for example, the article in the newspaper L’Express, “La France doit réparation aux personnes autistes maltraitées”, July 23, 2015, available at: http//www.lexpress.fr/actualite /l-etat-francais-condamne-pour-ses-scandaleuses-carences-en-matiere-d-accompagnement-despersonnes-autistes_1701328.html, accessed on December 22, 2017.

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4.5. Methodological elements Our research is exploratory in nature and based on a field survey conducted using questionnaires. All parents of autistic children are concerned (the diagnosis having been made). We asked regional autism resource centers, the autism expert center of Limousin (France) as well as approximately 30 French associations to distribute the survey to their network. The sampling method was non-probabilistic, as the population was difficult to identify, and answering it was voluntary. The sample was also geographically limited by the survey dissemination organs, and the questionnaire was available only on the Internet. The information collected in the survey had different natures. First, the parent’s information-communication Internet uses in relation to the child’s autism (information retrieved, motivation to go on the Internet, etc.) were collected, and the following questions focused on respondents’ practices of communicating, exchanging and sharing information with other parents, as well as content production. Finally, we tried to identify a level of trust toward different categories of professionals, in general, and following the reading of information online. In the second part, we collected sociodemographic and medical information about the autistic children and their parents. Many variables were presented in the form of Likert scales (from 1 to 7). At the end of each part of the questionnaire, open questions were proposed so that the respondent could provide a clarification if necessary. The two authors of this chapter have conducted this study for the purposes of multidisciplinarity, both theoretically and empirically. It is a question of crossing the thoughts of a researcher in information science and communication, and of a practitioner, a psychomotor specialist of autism, in touch with the field. We wished to emphasize the small amount of social science research on parents of autistic children and, more generally, on autism from an information-communication viewpoint. Therefore, we will interpret the statistical analyses using the field experience of the psycho-motor therapist who is co-author of this chapter; the hypothetical character will be specified, if any. In addition, because of the exploratory dimension, the open questions of the respondents, although limited to a few answers, will be able to direct us to a reality sometimes difficult to perceive with only statistical data.

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4.6. Sample presentation and statistical limits Our sample consisted of 106 individuals (after eliminating those who responded to too few items), each reporting about being a parent of an autistic child(ren) and having consulted information on the Internet about autism8 at least once. Of them, only 63 completed the entire questionnaire, in particular, the “sociodemographic profile” section (at the end of the questionnaire). The small number of complete responses made us cautious about the statistics that will be provided later9. Our questionnaire was distributed by the aforementioned organizations and associations, and more than 170 people connected to the questionnaire10. Many people stopped at the front page (presentation of the questionnaire) or on the fourth page. The fourth page asks a potentially difficult action for neophytes (a “drag-and-drop” to classify elements), which may explain the dropouts at this level. We put forward several other hypotheses explaining the low number of answers and the dropouts at the beginning of the questionnaire: – We do not precisely know the population size, which prevented us from knowing the rate of return and evaluating if it was low or high. – The virtual absence of human mediation can limit the commitment of the respondents (it is easier to answer if one is solicited by phone or face-to-face rather than doing it by e-mail, especially if the message received is generic [GAR 16]). – The exhaustion of parents and the higher level of stress in the daily routine of autism compared to other chronic or neurodevelopmental pathologies11 [BAS 04, DAB 10, KUH 10] make priorities of the day-to-day management and practical aspects (management of multiple appointments, behavioral disorders, etc.), leaving little room for more general solicitations.

8 A “filter” question at the beginning of the questionnaire made it possible to check these two points. 9 We will still use percentages, as they best represent the proportion of the sample concerned by each element. We will denote the number of individuals as “N = x”, where x is the number of individuals. 10 The LimeSurvey software, used to collect the answers, keeps the unfinished questionnaires. It also allows us to know at which page a respondent stopped while responding to the questionnaire. 11 Asthma, diabetes, attention-deficit hyperactivity disorder, oppositional defiant disorder, anxiety disorders, post-traumatic stress disorder or depression.

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– Field experience shows that not all families to whom the questionnaire was sent have sufficient language proficiency to answer it (although it is difficult to know the exact proportion). – We found a similar difficulty in a national ANESM study on autism, which collected fewer than 200 responses, while the dissemination of the survey was massive12. The respondents were mainly women (90%), with an average age of 44 years (median = 41 years). Table 4.1 shows who the respondent lived with (the reason for the parent not living with the child may be that the child is residing at boarding school during the week). Lives with

Frequency

Spouse and child(ren)

57%

Spouse

16%

Child(ren)

22%

Lives alone Total

5% 100%

Table 4.1. People living with the respondent. N = 63

A total of 83% of these parents also had other children, and 21% had another child with autism. 4.7. The trust crisis in autism: empirical evidence We asked parents about their child(ren) with autism. The average age of their child was 12.48 years (median = 10 years), and the diagnosis of autism was made, on average, when the child was 7.32 years old (median = 5)13. These last two figures seem to show that the diagnosis was made late, which implies late access to care and stimulation adapted to autism-related

12 ANESM website, available at: http//www.anesm.sante.gouv.fr/spip.php? Article 398, accessed on December 22, 2017. 13 A figure close to that of a Quebec study that indicated 7.14 years [POI 15]. We also note that the recency of the diagnosis in our sample is, on average, 5.5 years.

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disorders, since a diagnosis can be made in some cases around two years of age14. Some parents mentioned the following cases of self-diagnosis or difficulties for doctors to diagnose, sometimes leading to serious situations: P4415: “I fought for the diagnosis because my child was having a lot of behavioral disorder and the hospital told me to put my child in foster care ...” P58: “Diagnosis was made far too late, no questioning of pedopsy, no cross information, despite the recurring problems for our son.” P100: “[...] it is thanks to Internet research that we ourselves diagnosed our child’s autism, who had until then received the pseudo diagnosis of “disharmonic development” from the CAMSP.” P100: “Knowing that a child psychiatrist [...] has advised against talking to our child before the age of 18/20 and that the CAMSP who followed him for two years knew almost nothing about autism, it is rather difficult to feel less legitimate than a third party about our child.” In 39% of cases, the child did not benefit from medical care, either by a specialized institute or by a liberal professional, due to several hypothetical reasons: the refusal by some parents of the recommended orientation, in particular, an orientation considered unsuitable, exclusion from the ordinary school environment because of the lack of allocated means16 and, as

14 The French Federation of Psychiatry (in partnership with the HAH) indicated in 2005: “To date, the diagnosis of autism is clinical. Most often, the diagnosis can be made from the age of 2 years old. It is based on a bundle of clinical arguments collected in various situations by different professionals.” Source: Ministry of Health, available at: http//social-sante.gouv.fr/ IMG/pdf/depistage_et_diagnostic_de_l_autisme.pdf, accessed on December 22, 2017. 15 P is “parent” and the number is the unique identifier of the individual. 16 See, in particular, on this subject the conviction of France by the Administrative Court of Paris, available at: http//www.la-croix.com/Actualite/France/L-Etat-francais-condamne-pourses-manquements-face-a-l-autisme2015-07-23-1337619, accessed on December 22, 2017.

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mentioned by some parents, waiting time for a child to be cared for in a specialized institute can be long: P60: “SESSAD17 autism: 3 years of waiting.... and meanwhile, parents try to do their best for their child !!!!!!!!” P72: “my daughter is on the waiting list for a PEC18 in SESSAD and may never be helped for lack of space ...” These comments corroborated previous studies on the subject, showing the recurring difficulties encountered by parents in the diagnosis and support of their child in France (see, in particular, the Chossy report of 2003 [CHO 03]). Moreover, for many parents, the care was far from satisfactory as well as unsuitable (only 19% indicated that it had always been satisfactory): Type of support SESSAD

7% 19

IME/IMP

CAMSP/CMPP

42% 20

Day hospital/psychiatric service Other

21

Support judged unsuitable by the parent

35% 42% 7%

Table 4.2. Management deemed unsuitable by the parents (online reading). N = 66

These data support our initial postulate concerning a problem of parental confidence with regard to the medical profession taking care of the child. The confidence is neither low a priori nor does it decrease a posteriori of the care. Nevertheless, this dissatisfaction with care led 82% of respondents to seek information online or to increase their frequency of consultation if they were already looking for it. 17 Special education and home care service. Often coupled with ordinary school inclusion, to better meet the expectations of the family and the patient. 18 Supported (“Prise en charge”). 19 Medical-educational institute/medical-pedagogic institute. 20 Early medico-social action center/medico-psycho-pedagogic center. 21 Supported by a liberal professional.

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Confidence in the health professional also varies according to specialty. Figure 4.1 shows the level of confidence (collected on a Likert scale of 1–7, with 7 representing the highest level of trust22). We note that the levels of trust vary according to the types of professionals, and the central values (equal to 4), called “safe havens” or “of indecision”, are seldom selected, which seems to indicate that the parents are positioned on their trust in the professionals.

Figure 4.1. Level of trust in the information given by different health professionals. “< 4” indicates low level of confidence, “> 4” indicates high level of confidence. N = 68. For a color version of the figure, see http://www.iste.co.uk/paganelli/confidence.zip

The psychiatrists or child psychiatrists and the teachers/special needs teaching assistants are, thus, the professionals the parents trust the least concerning the information given about the autism of their child23, perhaps because of a lack of autism training, as indicated by some parents: P44: “the different training that I did made me realize that I know more about autism than some professionals who only had a few hours of training ...”

22 On the graph, we have grouped the values according to whether they were weak (< 4), central (= 4) or strong (> 4). 23 Méadel [MEA 06] already pointed out the distrust of psychiatric diagnoses, particularly historical (the dogmatic influence of a part of psychiatry with regard to autism, as we explained previously).

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P50: “I always ask the child psychiatrist who follows my son to provide me with studies confirming his opinion.” P83: “Apart from the psychologist (trained to TSA level) who follows my son, the trained pros are very rare and rarely available, we must find other ways to deal with this: TRAIN OURSELVES!!” On the contrary, parents have the most confidence in specialist doctors, whether they come from areas that are practical to a specific problem (sleep, concentration, etc.), such as neuropediatricians or geneticists, or accompany the child regularly (speech therapists, psychomotor therapists, etc.). We identify two causes for this higher level of confidence. On the one hand, these professionals can respond to everyday problems by providing practical advice that the parent can implement and then verify its effectiveness in the longer term. On the other hand, the regularity of professional-patient meetings favors the recognition of the legitimacy of this professional by the parent: P75: “Any intervention by a health professional can only be done in an appropriate and effective way if he knows the autistic child well. We cannot generalize; otherwise, we can have catastrophic consequences.” 4.8. Habits in information retrieval on autism Almost all respondents accessed the Internet from home (94%). The activities performed on the Internet and their frequency are shown in Figure 4.2. It is logical to note that some parents no longer performed certain activities, already having the expected information, such as finding associations or resource persons; those who did so generally had a recent autism diagnosis24. Frequently, the most accomplished activities are research and information monitoring as well as discussion with other people.

24 For example, 58% of those actively seeking associations at least once a week received the diagnosis less than a year ago.

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Figure 4.2. Parents’ activities on the Internet according to their frequency. N = 103. For a color version of the figure, see http://www.iste.co.uk/paganelli/confidence.zip

Those who interact with other people at least once a month (58%) do so most often with other parents (77%) or members of autism-related associations (50%), from which a large part is essentially composed of parents of autistic children in connection with professionals involved in autism. They interact with health professionals very rarely (15%). The nature of the exchanges is multiple: it can be the accompaniment of the child at the school or at the care level (67%), the management of behavioral disorders (65%), the care by health professionals (60%), the autonomy of the child on a daily basis and the methods and tools to help him (58%), the search for leisure activities (47%) or the ongoing research on autism (47%). 4.9. Parents’ motivations to go on the Internet and compensation research because of a lack of medical info-communication Figure 4.3 shows what leads parents to look for information on the Internet. Similar to the study previously mentioned on the patients themselves, relatives of patients particularly seek to supplement medical information (given by a professional) with health information, especially from patients or other relatives in a similar situation. They can also seek

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further health information, when provided within an association, for example. The crossover of sources is also an important element, as news on autism evolves quickly and more or less intensely depending on the country, making the information plethoric and heterogeneous. Moreover, the fact that there are several forms of autism (“autistic spectrum”) can also explain the search for crossovers of information, to find those that come closest to the reality experienced by the patient and the patient’s relative.

Figure 4.3. What leads parents to go on the Internet. N = 103. For a color version of the figure, see http://www.iste.co.uk/paganelli/confidence.zip

The information retrieval deemed more reliable than that given by professionals is more rare. Two reasons may explain this: on the one hand, the question does not take into account the diversity of professionals, and it is possible that the respondent had difficulties generalizing (with only one answer) his/her opinion for all professionals; on the other hand, changes in the support of autism and ongoing research tend to reduce the difficulties of diagnosis and management that may be encountered by health professionals. This is not true for everyone, or everywhere, as some parents can testify: P18: “Geographical isolation and lack of professionals associated with personal isolation generated by the ignorance towards autism (especially Asperger’s) by the family circle, local professionals, teaching staff.”

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P72: “[...] lack of knowledge of autism by professionals in my area.” P29: “The unknown of this pathology’s research done abroad and publications made online compared to seminars or information other than the region made by health professionals or experienced autistic adults [...]” The focus should also be on parents who need support from other parents via the Internet (44%25). More than others, they want: to find information deemed more reliable than that given by professionals on the Internet (58% against 39% among those who are not expecting support from other parents on the Internet); complete medical information (77% vs. 59%) and health information obtained from other parents and associations (73% vs. 48%) and attesting to their experience (74% vs. 16%). We explain these figures in different ways: – They seek to “compensate”26 for information-communication gaps or dissatisfactions (whether concerning autism itself, practical information to manage the daily routine, etc.) coming from medical professionals (in addition to searching on the Internet to find “more reliable” information, they are less likely to trust child psychiatrists – 27% vs. 41%, and specialist doctors – 56% vs. 64%); they do this compensation with other parents. – Being geographically isolated (some verbatim indicate it), they cannot meet relatives nearby and then use the Internet to contact them. – “They are lost” in the mass of information on their child’s autism, during the implementation of the advice given to them, or are losing confidence in the lack of short-term results of the elements implemented. They turn toward other parents and/or verify advice provided by parents or professionals. – Testifying makes it possible to express their suffering, an exasperation, in particular with people who can understand more easily what is happening. This can serve as an outlet to a daily routine, which generates intense stress.

25 N = 101. 26 The term is not chosen by chance. In a previous work [DUS 14], we studied the phenomenon of compensation by people Y due to a lack of communication with people X.

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What the medical sector proposes or has proposed has not met their expectations in terms of information, as well as of day-to-day care. These parents find themselves without a suitable solution that they can believe: a match between their perception and the information given by the medical actors so that they feel involved is necessary to establish and maintain a relationship of trust. Without this, they want to be supported by other actors, in which they recognize themselves: other parents. 4.10. Conclusion: overview and perspectives Patients use information on the Internet to better understand a pathology, supplement medical information, improve their daily experience or, in some cases, have more in-depth exchanges with their doctor. The involvement of the patient in this research seems even stronger as the impact of the disease is significant and lasting on the daily routine. This is particularly the case for chronic diseases and autism, which share the status of long-term conditions and have in common the presence of a degree of impairment requiring long-term treatment. The search for information can then strengthen the status of the patient in his/her “actorization”. In the case of chronic illnesses, many patients seek information on the Internet, without calling into question the medical discourse, which is not the case for autism at all. Due to conflicting information between a guilt-ridden medical discourse and other potential sources of information (especially the Internet), relatives (here, parents) are more likely to question medical authority. The diagnostic wandering, an important waiting period of care, a care considered unsuitable, as well as the great disparity of the proposed means (territorial heterogeneity, which remains important in terms of proposals and quality of services, professionals not trained on methods and updated scientific data) also have a significant impact on trust relationships with professionals. Information retrieval is not always an additional step; it is sometimes a replacement (of the reliability of the information delivered by the professionals). As a result of these difficulties, it seems that parents are trying to “compensate” for information-communication gaps by searching for information on the Internet (82% of parents who have judged the care of their child to be unsuitable have turned to the Internet or have intensified

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their research) and exchanging information with other parents via the Internet (44%). They can, thus, become more legitimate referents than some professionals in terms of medical knowledge and health knowledge. This survey will be continued and improved (in particular to reduce the technical difficulties and limit the withdrawal numbers from the survey), and we will directly contact the parents in order to facilitate the passing of the questionnaire, to have their commitment, to obtain more answers and to be able to propose statistical processing on a more representative sample of the population. We wish to continue our investigations, both by confirming or reversing the hypotheses resulting from the analysis of the results that we have presented and by answering questions that are not addressed here: What are the criteria that make it possible to judge the reliability of information read online? What is the impact of the child’s journey on trust in professionals? How is a relationship of trust built up or lost with professionals? How is the legitimacy, in terms of medical knowledge, of a parent of a child with autism constructed? 4.11. References [AMS 17] AMSELLEM-MAINGUY A.M., “Usages d’internet pour la santé par les jeunes: place des professionnels de santé et des parents”, Education, Santé, Sociétés, vol. 3, no. 1, pp. 69–85, 2017. [BAS 04] BASTIAANSEN D., KOOT H.M., FERDINAND R.F. et al., “Quality of life in children with psychiatric disorders: Self-, parent, and clinician report”, Journal of the American Academy of Child and Adolescent Psychiatry, vol. 43, no. 2, pp. 221–230, 2004. [BID 95] BIDAULT F., CARLOS JARILLO J., “La confiance dans les transactions économiques”, dans BIDAULT F., GOMEZ P.-Y., GILLES M. (dir.), Confiance, entreprise et société, pp. 109–123, Éditions ESKA, Paris, 1995. [BOU 12] BOUDIER F., BENSEBAA F., JABLANCZY A., “L’émergence du patient-expert: une perturbation innovante”, Innovations, vol. 3, no. 39, pp. 13–25, 2012. [CHA 12] CHARDEL P.A., GOSSART C., REBER B. (dir.), Conflits des interprétations dans la société de l’information : éthique et politique de l’environnement, Hermes-Lavoisier, Paris, 2012.

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[CHO 03] CHOSSY J.F., La situation des personnes autistes en France : besoins et perspectives, Report, Centre de ressources autisme, available at: http://www.crarhone-alpes.org/IMG/pdf_Rapport-2003-Chossy.pdf, 2003. [DAB 10] DABROWSKA A., “Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome”, Journal of Intellectual Disability Research, vol. 54, no. 3, pp. 266–280, 2010. [DUB 13] DUBREUIL A., HAZIF-THOMAS C., “Les aidants et la santé sur internet ou les ‘aidantnautes’ s’entraident”, NPG Neurologie – Psychiatrie – Gériatrie, vol. 13, pp. 250–255, 2013. [DUS 14] DUSSARPS C., Dimension socio-affective et abandon en formation à distance, Thesis, Bordeaux-Montaigne University, available at: https://halshs. archives-ouvertes.fr/tel-01108344v2/document, 2014. [GAR 16] GARCIA BECERRA O., “Survey research on quality expectations in interpreting: the effect of method of administration on subjects’ response rate”, Meta, vol. 60, no. 3, pp. 542–556, 2016. [HAS 07] HAS – HAUTE AUTORITÉ littérature, Report, May 2007.

DE SANTÉ,

Le patient internaute : revue de la

[HAS 12] HAS – HAUTE AUTORITÉ DE SANTÉ, Autisme et autres troubles envahissants du développement : interventions éducatives et thérapeutiques coordonnées chez l’enfant et l’adolescent, Report, 2012. [HOC 09a] HOCHMANN J., “Autisme : deux siècles de polémique”, Sciences Humaines, no. 206, pp. 24–29, 2009. [HOC 09b] HOCHMANN J., Histoire de l’autisme, Odile Jacob, Paris, 2009. [JOU 10] JOUBLIN H., Le proche de la personne malade dans l’univers des soins, enjeux éthiques de proximologie, Éditions Érès, Toulouse, 2010. [KIV 10] KIVITS J., LAVIELLE C., THOËR C., “Internet et santé publique : comprendre les pratiques, partager les expériences, discuter les enjeux”, Santé Publique, vol. 21, pp. 5–12, 2010. [KUH 10] KUHLTHAU K., ORLICH F., HALL T.A. et al., “Health-related quality of life in children with autism spectrum disorders: results from the autism treatment network”, Journal of Autism and Developmental Disorders, vol. 40, no. 6, pp. 721–729, 2010.

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[MAU 12] MAUREL D., CHEBBI A., “La perception de la confiance informationnelle”, Communication et organisation, no. 42, pp. 73–90, 2012. [MEA 06] MEADEL C., “Le spectre ‘psy’ réordonné par des parents d’enfant autiste : l’étude d’un cercle de discussion électronique”, Politix, vol. 1, no. 73, pp. 57–82, 2006. [MEA 10] MEADEL C., AKRICH M., “Internet, tiers nébuleux de la relation médecinpatient”, Les Tribunes de la Santé, vol. 4, no. 29, pp. 41–48, 2010. [ORN 73] ORNITZ O., “Childhood autism. A review of the clinical and experimental literature”, California Medecine, no. 118, pp. 21–47, 1973. [PAG 14] PAGANELLI C., CLAVIER V., “S’informer via les médias sociaux de santé : quelle place pour les experts?”, Le Temps des Médias, vol. 2, no. 23, pp. 141–143, 2014. [POI 15] POIRIER N., VALLÉE-OUIMET J., “Le parcours des parents et des enfants présentant un TSA”, Santé Mentale au Québec, vol. 40, no. 1, pp. 203–226, 2015. [ROM 08] ROMEYER H., “TIC et santé : entre information médicale et information de santé”, Tic&Société, vol. 2, no. 1, 2008. [RUT 91] RUTTER M., SCHOPLER E., L’autisme, une réévaluation des concepts et du traitement, Presses universitaires de France, Paris, 1991. [SAL 15] SALESSES L., METGE M., PATON N. et al., “Esanté : connaissance et coconstruction représentationnelle, pour une meilleure compréhension des pratiques”, Les écosystèmes numériques et la démocratisation informationnelle: Intelligence collective, Développement durable, Interculturalité, Transfert de connaissances, available at: https://hal-uag.archives-ouvertes.fr/hal-01265735/ document, 2015. [THO 13] THOER C., “Internet : un facteur de transformation de la relation médecinpatient ?”, Communiquer, no. 10, 2013. [WIN 98] WING L., Autistic Children: A Guide for Parents, Citadel Press, London, 1998.

5 Trust and Information Behavior of French Air Force Flight Nurses

5.1. Introduction The link between trust and information behavior is well established. In our work on commanders’ trust and information behavior [LEZ 17], we found out that the French Army is a trusting organization. Common sense based on culture, values, symbolism and history forms a solid foundation for this strong trust. In the military environment, trust is built and put to “the test”, especially during war. Therefore, approaches to trust, such as Harmann’s praxis (2011) in [LEB 13] or the practice of trust [QUE 01], seem to us in line with this field of research. We have identified other underlying elements of trust building such as temporality, background, experience, legitimacy, moral authority, experiential authority, culture and values. Our results show that trust is a structuring concept of the information behavior of this group of actors [LEZ 14, LEZ 17]. This chapter is a continuation of this work. Within the military institution, we conducted a qualitative empirical survey of 19 flight nurses. To our knowledge, no studies in information and communication sciences (ICS) have been conducted with this group of actors. Indeed, there is a single air squadron of the so-called “angels of the sky” within the French Air

Chapter written by Anna LEZON RIVIÈRE and Madjid IHADJADENE. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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Force. These are military nurses dedicated to air evacuation missions, mainly soldiers injured in theaters of external operations1. In general, there are only a few studies devoted to flight nurses and, above all, to military flight nurses, which mainly concern research in the fields of health or aeronautics. To cite a few rare examples, studies of civil flight nurses include clinical decision-making2 in emergency situations [PUG 02] and their research activities [ERL 00]. Reimer and Moore [REI 10] formulated a theory of flight nursing expertise, still in the civil domain. In the US military, a study was conducted with care-trained flight paramedics in helicopter evacuations during the war in Afghanistan [MAB 12]. The nursing role of the flight nurse implies, in particular, a significant responsibility as well as the decision-making with variable levels of autonomy. However, studies to deepen the characteristics and experiences of this group of actors are rare [PUG 02]. In agreement with Australian researchers [BRI 16], we find that contemporary scientific research provides little detail on the work of flight nurses and is likely absent in ICS. Our qualitative empirical study aims to explore the information behavior of flight nurses. In this work, we focus, in particular, on the role of trust in information behavior in situation awareness3 (SA) of this group of actors. We will begin this chapter by reviewing the approaches to information behavior in SA while clarifying its definitions. Next, we will present the group of actors studied as well as the methodology used for our field study. The analysis of the results allowed us to conclude the ways in which the “trust” factor interacts with information behavior of flight nurses during air evacuation missions. 5.2. Information behavior and situation awareness The original impetus for research in SA came from the field of military aviation [SAL 06]. Since then, according to these authors, SA has become a subject of critical research in almost every field involving human activity in 1 Operation: “Set of military actions conducted by a force generally joint, national or multinational or even inter-allied, in a specific geographical area, called a theater of operation, with a view to achieving a strategic objective. It is carried out in a given space-time frame. A baptismal name is usually given to him.” [EMA 15]. 2 CDM: clinical decision-making. 3 Situation awareness: translated from the French “conscience de la situation” [CHA 07].

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complex and dynamic systems. Research in SA is carried out in various scientific fields (human sciences, psychology, engineering, etc.) and fields such as military operations [END 00, MAT 00], aviation [KAB 02, KEL 04], air traffic control (ATC) [END 98, HAU 03], automobiles [ZHE 04] and C4i4 environments [WAL 04] in [SAL 06]. The most commonly used definition of SA is that presented by Endsley: “the perception of the environmental elements in a volume of time and space, the understanding of their meaning, and the projection of their status in the near future” [END 95]. Dominguez in [KAR 04] argues that SA constitutes a “continuous extraction of environmental information, the integration of this knowledge to form a coherent mental image and the use of it to guide the perception and anticipation of future events”. Thus, using various cognitive processes, SA seems to involve three hierarchical levels: perceiving critical factors in the environment (level 1); understanding the meaning of these factors, particularly in relation to the actor’s objectives (level 2); and, finally, understanding what will happen in the system in the near future (level 3). A more recent approach to SA is that of team or shared SA. Team SA can be defined as an “active construction of a model of a partially shared and partially distributed situation between two or more actors from which an actor can anticipate the near future” according to Artman and Garbis in [SAL 06]. The authors state that the concept of team SA is not yet clearly defined or understood. Also, Salmon et al. [SAL 08] argue that the specific relationship between the team SA and the team behaviors and attitudes, including trust, remains largely unexplored. In the health field, following the study conducted with nurses, Busby [BUS 09] proposed the “theory of SA in multi-casualty incidents”. In this environment, he defined SA as “the ability to accurately identify, perceive, and comprehend multisource and relevant information pertaining to a particular emergency event or series of events, thereby producing the ability to mitigate current conditions and/or project’s future impact enough to facilitate effective action in planning for or responding to public health and safety needs” [BUS 09].

4 C4i: command, control, communication, computers and intelligence.

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Figure 5.1. Theory of situational awareness in multi-casualty incidents [BUS 09]

In this theory (see Figure 5.1) proposed from the field study, one of the constitutive elements is “handling information”. This component, in the same way as all the categories in this model, is anchored in the “experience” and interacts with “appreciating context and complexity” and “establishing and maintaining control”. Thus, referring to their experience, nurses act in different types of contextual-based situations to bring care and relief. By relying on the information they have and on the information that is constantly available to them, while communicating through various types of channels with many stakeholders (“handling information”), they evaluate the context, the complexity and the dynamic nature of a specific situation to anticipate things and have a good perception of the situation (“appreciating context and complexity”). The author emphasized the prominent role of information management within SA. By taking updates into account, collecting information from a multitude of sources, disseminating it, sharing it and communicating it to various actors and institutions are identified as information behavior of nurses encountered in SA during multi-casualty

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incidents. Furthermore, the main properties of the category “manage information” include, according to the results of this study, the management of the initial and general information concerning the incident and the reception of updates and communication. Communication can provide critical information and, hence, it is considered a determinant of this category of SA. In this study, communication behavior is seen as intrinsic to information management by the nurses surveyed. In the military field, Sonnenwald and Pierce [SON 00] highlighted the collective character of the information behavior of military actors. The researchers formalized the concept of “interwoven situational awareness”, which corresponds to the shared/overlapping patterns of individuals, intragroups and intergroups of “situational awareness”. In addition, according to Kardos, there are many observable behaviors that can be used as indicators of team SA or shared SA. The information behavior to assess the level of team SA would be to communicate important information, confirm information whenever necessary and/or possible, establish the reliability of ambiguous information, verify/update old information, provide upstream information, obtain new and up-to-date information about the situation, understand complex relationships and, finally, brief frequently [KAR 04]. The aforementioned studies [BUS 09, KAR 04, SON 00] make it possible to identify a first set of information behavior in SA, to correlate it with those of the flight nurses during the analysis of the survey results. In the context of our study, SA corresponds to the air evacuation mission (MEDEVAC) carried out by a flight nurse. “MEDEVACs may be carried out via dedicated military aircraft, military air or civil aviation” [VIT 14]. Its time volume [END 95] extends from the “triggering” moment of the flight nurse for a mission to the moment when he/she no longer falls under this mission. The space volume [END 95] depends on the type and destination of the mission. The destinations are throughout the world where French soldiers or French citizens can be found. The flight nurse, depending on the type of mission and the severity of the patients’ condition, has to carry out the mission alone (as the only health personnel on board the aircraft) or with a medical team. The two concepts of SA are therefore applicable: individual SA and team or shared SA. It will be the same for the information behavior in situation awareness that needs to be considered from the viewpoints of both the individual actor and the group of actors brought together for the mission.

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5.3. Group of actors and study methodology Our empirical study was conducted within the Air Force at the only existing unit of flight nurses, the air squadron 06/560 “Étampes”. Led by a senior doctor in aviation medicine, it has 27 flight nurses (ICVAA5) and NCOs of the Air Force. Because of the activities and constraints (internships, training, recovery, etc.), the practically mobilizable operational workforce amounts to approximately 20 people. The specificity of this profession lies at the crossroads between the nurses’ skills and those of the military and civil aviation field. In fact, these nurses practice their profession under specific conditions. They have the medical responsibility of patients during air transport. Transport can be carried out not only from operating theaters, but also from any place where these military nurses can be called upon. It is important to mention that the flight nurses, before being selected during a competitive exam and trained for this career, already have a state nursing diploma and have worked as nurses for at least three years in hospitals or other medical services. Our field survey was conducted from September 2016 to June 2017. We started with three preparatory interviews, which allowed us to better understand our field of research – its expertise, organization, structure and specific medical language. Then, we conducted 18 interviews with the flight nurses according to the chosen methodology. In our research approach, we followed the methodology of rooted theorization6 [LUC 13]. This choice for the design of hypotheses and the emergence of concepts from the field was mainly motivated by the very few studies in information behavior concerning this group of actors. For conducting interviews, we used the sense-making methodology (SMM) [DER 08], enriched by the biographical approach to life stories [LEG 00]. SMM is considered a “proven” methodology, particularly when studying information behavior [FIS 05]. For this particular field, at the confluence of the military environment and health, we found it pertinent to also question people on their background (career, mission) in the form of testimonies and narrative behavior. In our view, these two methodologies

5 ICVAA: Air Force flight nurse (infirmier convoyeur de l’armée de l’air). 6 Grounded theory.

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share “the look of the present on the past (an afterthought), a memory that produces meaning” [LEG 00]. Our study was able to proceed with trust thanks to the support of the squadron command in our investigation. According to the methodologies adopted, the interview favored the person’s narrative and the non-intrusion by the investigator. The interviews were of variable durations with an average of 1 h. The exploitation of the results began with the literal transcription of the interviews. We then proceeded to classify these rich qualitative data into categories and concepts that emerged from the field [LUC 13]. This set was a solid foundation of analytical work. 5.4. Analysis of the empirical study’s results To explore the place of trust in the information behavior of flight nurses involved in air medical evacuation missions, we first analyzed the ways in which this group of actors builds relationships of trust. Our analysis showed that actors primarily associated trust with the concepts of roles within the structure, communication and the triptych skills/knowledge/experience. Control seems to be an antinomic counterpart to trust. However, in fact, it plays a safeguarding role: it is part of the reflexes acquired to act in the missions (MEDEVAC) where concentration and attention must be constant and/or maximum (situation awareness). 5.4.1. Building trusting relationships The majority of the missions are carried out by the flight nurses as unique “health” personnel on board the plane, where the person must therefore know how to immediately integrate with the crew. During missions where the patient’s pathology is more serious, the flight nurse ensures the link between the crew and the medical team present on board. Therefore, although there is “trust that is gained over time”, the flight nurse “recreates relationships each time [...] whatever the mission, plane, destination”. Then, trust in the role and competence intervenes to reinforce the trust that could not be built in the long term between the members of the team: “There is trust that is gained over time, as you see people, you get to know them. [...] But, it is true that it is difficult, knowing that it is only really temporary for this kind of mission. After

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they leave, however, the work must be done again each time, with each team [...] each time it must be redone because they are so many too. Each time I see new faces [...] After, we must also know how to adapt to each other.” “We need to create relationships each time, wherever we go, whatever the mission, plane, destination. But afterwards, it’s the same process with a patient [...] So, thankfully there’s this trust (towards the role) anyway. In any case I trust the pilot: it’s his job, I know he manages, and the stewards: it’s their job, they manage.” The medical evacuation missions of those wounded in external operations are of high importance. Team mobilization is considered maximum and trust is given a priori: “Those are missions that are very special, we are going to fairly hostile countries, to recover an [injured] French soldier. It is something that is important in the mission and we cannot afford to do just anything, or not to trust the people who are with us. These are people who are there for our country. [...] the mission is really important [...] so we cannot afford not to trust the nurse, the doctor, we have to trust everyone and take care of the patient really as well as we can.” Flight nurses also carry out external operations, where, for several months, they perform medical evacuation missions in intra-theatre operations. During this period, they are part of the crew of a medical plane. In this context, shared experience builds trust. The latter is reinforced by the strong emotional relationships that are created not only between the team members, but also between the team and the units in the field: “[...] On this experience [in an external operation, medical evacuation of a seriously wounded person], the trust relationship was established between the doctor, the nurse and me. And then, it went very, very well the two remaining months.”

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“Until the end of the mission [long-term mission on a theater of operations], in fact, there was a super-strong connection with [the unit receiving medical help], it was quite impressive. And until almost the last day, [...] until the end, they said thank you. Even though this happened, and it was our role to help and we were there at the time, all the better.” During their missions, flight nurses create and continually recreate relationships of trust in order to exercise their profession. These processes are not a possibility offered, but a business component and a necessary skill: “it’s part of the job”. The “institutional” confidence of the structures (Air Force, Army Health Service, etc.) and the roles (captain, chief cabin attendant, etc.) that compose them contribute to the creation of these relationships. In the context of external operations, the emotional relationships reinforce and consolidate the trust that is then established in its solidity and the duration. 5.4.2. Trust and roles/structure as information sources The structure and its roles constitute reliable and legitimate information sources for the actors involved in the medical evacuation mission. The trust between the captain and the flight nurse “is natural”: “because they know our role”. This role inspires trust that is based on respect and legitimacy of this squadron that has proven itself over time: “they know we are doing our job well”, so “they are not in doubt” when they “ask questions”. The profession linked to the field of health “reassures”; “they are reassured that there is a flight nurse with them”: “The person responsible for taking a patient on board is the captain. He is in control of what is happening on his plane. So, he will tell us: “Was the file complete? There are no worries?” We will say: “yes, yes”. On the other hand, commanders trust us very much. They know [...] that we are meticulous and that we are in control and that there are no worries. [...] When a problem occurs, they come to us, both for a patient who is uncomfortable and in relation to MEDEVAC [...] This trust is natural, we will say, because they know our role, [...] they know we are doing our job well.”

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“I think there is trust because precisely, when there is a problem, or questions about a patient, they (pilots, crew members, passengers) come to see us anyway, they come to ask us questions, when there is still a question, we answer them and when we answer them, they are not in doubt, (they do not doubt our work). I think there is some trust in the sense that [...] they are reassured that there is a flight nurse with them.” The identification of roles makes it possible to quickly define the information typologies to be sought and communicated: “just to specify our roles and all information is exchanged”, “we know what we have to say, what we must ask”. “The transit manager is identified because he has his yellow jacket. And then, when we go to him, I always make sure to say: “Hello, are you the transit manager?” I say: “I am the flight nurse”. The transit manager says: “Ah, yes, the MEDEVAC!” And, in fact, just by clarifying our roles and all information is exchanged like that, there is this identification of roles: transit manager, flight nurse, so we know what we have to say, what we should ask, what we can say to the other, what we can ask especially.” The search for information on flight nurses implies a thorough knowledge of the structure, the system of roles and their attributions. These structures are complex and come under the national and international territories or even all the countries where the mission can take place. This knowledge allows for the rapid identification of reliable and legitimate information sources and the communication of this information in a trustworthy situation. It is essential to carry out the mission, especially in a context of high risk, where time is a key factor. 5.4.3. Trust and communication To create a “good working environment”, flight nurses have “this relational capacity [...] to go to people”. Knowing how to build relationships with new actors by communicating with an empathic attitude toward “the

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other” and with adequate information content is one of the necessary skills of the flight nurse: “We are always a team unit where we go. That is to say, [...] the pilots, the flight engineers they all know each other, they are used to working together. [...] We are always isolated. So, if we do not have this relational capacity with people, it cannot work [...], someone who does not have the capacity to go to people and create this good working environment, he will not be able to do this job.” “I rarely have problems in the air, I think because people trust how everything is organized, because I introduced myself, I explained everything that I could explain to them and that I was here for them, and “I have to get to them”. That, I think, is important, especially for the patients: we do not get rid of them, we come to get them.” To work in a “climate of trust” during long missions in theaters of operations, the specific time spent on communication involves the time spent before departure and then at the beginning of the mission: “I always try to make a briefing for the first few days”. The “worries” can manifest “if there is no such communication”. At the end of the mission, “we made a debriefing together to tell how the mission went”: “After, there is always the human side of it all [...] we talk a lot before we go out on a mission, in general. Like the doctor says: “I like to work like that and I’m expecting this and that from my nurses”.” “When I go on a mission, in operation for several weeks, I always try to have a briefing the first few days, whether with a medical team like with the mechanics, talking about the organization, about what we expect from each other [...] and precisely to create this climate of trust. If there are any worries, it is often precisely because there is not this communication.” “We did a debriefing together to say how the mission went, that’s what happened, the doctor also explained his role, everything we did not see.”

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Flight nurses have a clear awareness of the place of communication when working: “It’s a communication job, being a nurse, for me, it’s a communication job [...] because, yes, there is technique involved, but here is the human, they are patients, we have to explain to them what we are going to do to them, how it is going, so normally we are equipped for that, because we know how to communicate.” The “human side” of the flight nurse profession, which can be carried out in a context of ultimate danger, structures the communication practice. Time for “communication” is necessary to create strong relationships of trust that go far beyond a good working environment. These relationships of trust will enable the actor to face risky situations while preserving his/her mind and that of the actors involved (patients, crew, medical team). During missions, where the risk level is lower, the intensity of communication is maintained, or it becomes less frequent, thereby decreasing the emotional burden of the career. In this context, communication is not only about transmitting information, but also about making an important contribution to the safety of the actor and the success of the mission. 5.4.4. Trust and skills/knowledge/experience Trust is given according to “skill”, “knowledge” and “adaptive capacity”, the latter being particularly useful in the environments concerned by the missions. The same is true of professionalism resulting from quality training as well as experience. A possible difficulty of the communication between the actors does not lead, ineluctably, “to a lack of trust”: “For me, well, it’s purely personal, it’s only my responsibility, the trust in the doctor is based on his competence, his competence as a doctor, his ability to adapt to the situation; so that’s his knowledge, skills and adaptability. Of course, if I cannot communicate with my doctor, it’s a bit more complicated. This does not necessarily lead to a lack of confidence in him.”

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“So after all, you have to trust the crew, they are professionals too, so they are trained to arrive in a theater in a hostile environment.”

This knowledge and experience is regularly shared (formal and informal sharing). In this way and by training continuously (individually and through regular training), the skills are worked on and maintained at a level of excellence, which, in turn, inspires trust in the role of the flight nurse: “What helped, too, was the preparation for me of the Casa nurse, meaning the plane and the medical gear, knowing where everything is positioned inside, where I will find my equipment and what I have as available material. So, all the work that was done by the two flight nurses before, with the little booklet, and then, the reception of this work and the study of this work, plus the user manuals that there could be here regarding different devices [...].” “Because before going on a Falcon, for example, we have a list of equipment to take and we have to make sure that everything works before leaving. But, I know that, for example, if we do not have enough time to check, we still know that this material is checked regularly (by the flight nurses of the dedicated cell). So, we relatively trust our equipment and our kits.” Carrying out medical evacuation missions “in a hostile environment” requires skills and knowledge that ensure the speed and safety of each action. Experience is a considerable asset in the management of events and, therefore, associated information. Sharing what has been learned within the squadron through the sponsorship system, dedicated meetings, informal exchanges and systematic debriefings (oral and written) of the missions is a known and recognized information practice of all flight nurses. The expertise thus obtained and maintained inspires and establishes this trust a priori from which they benefit during their missions.

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5.4.5. Trust and control In this specific career as a flight nurse, working “alone and isolated” in an environment where “we never know what will happen”, “trust does not exclude control”: the verification of a certain type of information is systematic. It is “part of our training and reflexes”: “As I have often been told, “trust does not exclude control” and even more in the environment where one works alone, feeling isolated. It’s better to make sure you leave with everything, to have more with you, rather than being stuck on a plane. You never know what will happen.” “Trust does not exclude control, even if we are given a case file, that’s it: yes, but you will stay with me and we will check that there is everything. Because if I don’t have everything, after you leave, I am all alone. People often understand [...] I check that I have papers, that there are drugs [...].” “I have the papers that I need, we know that then, I will check systematically. […] That’s a habit I make. [...] We never know how it will end [...]. All of this, it’s just procedure [...]. It’s part of training and reflexes.” Controlling, checking accuracy, comprehensiveness and reliability of information should eventually become “a habit to make”, “a reflex”. Trust, whatever it is, allows strict procedural application with a view to controlling the mission environment, actor safety and the respect of the rules imposed for these same objectives. This informational practice in a situation of awareness characterizes the role of flight nurses and also contributes to the trust they are given a priori. 5.5. Discussion and conclusion The aeromedical evacuation squadron, which flight nurses belong to, is an integral part of the Air Force, which comes, in terms of career management mainly, under the Service de santé des armées [French Military Health Service] (SSA). It perpetuates the inherited traditions and maintains the link with its history, in particular, by organizing reunions with old flight

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nurses. Just as in the whole of the military institution [LEZ 17], the construction of common sense [WEI 95] benefits the actors of trust a priori. Examining the place of trust in the information behavior of flight nurses is an original feature of this group of actors. Indeed, we have seen the absence of studies concerning this specialty and, in particular, SIC. Given the environment of their activity exercised, we studied the information behavior in situation awareness. The unit of analysis was the “medical air evacuation mission” from the moment the flight nurse’s role was “triggered” (assigned to a mission) until it was completed. These missions have SA characteristics, a well-defined space-time volume; they include several situations of uncertainty and risk, a dynamic and complex environment, and they require a concentration and increased attention (that implies a good management of fatigue) to maintain awareness of the situation (individual SA) [END 95, KAR 04] and/or share it with the team (team SA) [SAL 06, SON 00]. In this context, during many and various missions and at various destinations, the flight nurses are led to create and recreate the relationships of trust by interacting with many actors to carry out the mission. Studying the creation of these relationships of trust in SA according to Weick’s notion of sense-making further in depth [WEI 95] could constitute more profound research. Indeed, according to Weick, the organization is based on the existence of relationships. The analysis of the results shows that the actors mainly associate trust with the concepts of structural roles, communication and the triptych skills/knowledge/experience. Finally, trust does not exclude the control that is part of the career reflexes acquired to act in the context of these missions. Busby [BUS 09] points out the importance of information management/ processing in nurses’ SA during multi-casualty incidents. Collecting information from multiple sources is one of the essential information behaviors in the SA of flight nurses. Trust in legitimate sources such as institutional roles [LEZ 15] allows quick and targeted action in the search for information. One of the SA research applications is the design of training techniques in order to maintain a good level of SA when searching for information [HOF 98, WIC 08].

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Communicating [BUS 09] important information [KAR 04] is designated as one of the information behaviors in SA by these authors. Knowing how to build trust with new actors, by communicating with an empathic attitude with adequate information content, is part of the professional-informational behavior of the flight nurse. In this context of SA, communication is not only the information transmission, but also a condition for the success of the mission. The importance of experience and training as a result of the study is in agreement with two models: model designed by Busby [BUS 09] and that by Reimer and Moore [REI 10]. The first author based all the classifications of his theory on background experience. Reimer and Moore [REI 10] presented a theory of flight nursing expertise in the civilian field. This model is composed upstream of elements like experience and training. These elements then contribute to the factors associated with decision-making, such as the transport environment of care, psychomotor skills, signals and patterns and the specific knowledge of medical air transport. The experience and training are depositories of trust because of the strong command of professional and informational behavior that they generate. The practice of sharing knowledge and experiences ensures maintaining the high level of expertise for this military air health squadron. This study of flight nurses allowed us to identify the concepts that trust is associated with and the underlying information behavior in situation awareness. This work could be extended by complementary empirical research on the place of trust in the decision-making of flight nurses in SA and in connection with sense-making. When the boundaries between specialized information validated by legitimate authorities and information that has not yet been validated seem permeable, this study of flight nurses shows that, in a risk environment and in emergency situations, primary information sources relate to humans and are legitimized by the role endorsed within the institutional structure. In an environment where the criticality of situations requires a high level of competence and trust, constructed in action and in time (historical) is one of the main factors of information behavior.

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5.6. References [BRI 16] BRIDESON G., WILLIS E., MAYNER L. et al., “Images of flight nursing in Australia: a study using institutional ethnography”, Nursing and Health Sciences, vol. 18, pp. 38–43, 2016. [BUS 09] BUSBY S.T., Situational Awareness in Multi-Casuality Incidents: Theory Development from the Field, Thesis, University of Tennessee, 2009. [CHA 07] CHALANDON X., Conscience de la situation : invariants internes et invariants externes, Thesis, CNAM, 2007. [DER 08] DERVIN, B., “Interviewing as dialectical practice: sense-making methodology as exemplar”, Paper Presented at: International Association for Media and Communication Research (IAMCR), Stockholm, Sweden, 20–25 July 2008. [EMA 15] EMA/CPCO, Procédures interarmées du soutien des engagements, Publication within the Armed Forces, Ministère de la Défense, 2015. [END 95] ENDSLEY M.R., “Toward a theory of situation awareness in dynamic systems”, Human Factors, vol. 1, no. 37, pp. 32–64, 1995. [END 98] ENDSLEY M.R., SMOLENSKY M., “Situation awareness in air traffic control: the picture”, in SMOLENSKY M., STEIN E. (eds), Human Factors in Air Traffic Control, Academic Press, New York, 1998. [END 00] ENDSLEY M.R., HOLDER L.D., LEIBRECHT B.C. et al., Modeling and Measuring Situation Awareness in the Infantry Operational Environment, Research Report No. 1753. U.S, Army Research Institute for Behavioral and Social Sciences, Alexandria, VA, 2000. [ERL 00] ERLER C.J., FIEGE A.B., THOMSON C.B., “Flight nurse research activities”, Air Medical Journal, vol. 19, no. 1, pp. 13–18, 2000. [FIS 05] FISHER K.E., ERDELEZ S., MCKECHNIE L., Theories of Information Behavior, Information Today, Medford, New Jersey, 2005. [HAU 03] HAUSS Y., EYFERTH K., “Securing future ATM-concepts’ safety by measuring situation awareness in ATC”, Aerospace Science and Technology, vol. 7, no. 6, 2003. [HOF 98] HOFFMAN R.R., CRANDALL B., SHADBOLT N., “Use of the critical decision method to elicit expert knowledge”, Human Factors, vol. 40, no. 2, pp. 254–276, 1998.

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[KAB 02] KABER D.B., ENDSLEY M.R., WRIGHT M.C. et al., The effects of levels of automation on performance, situation awareness, and workload in an advanced commercial aircraft flight simulation, NASA Langley Research Center Grant, Hampton, 2002. [KAR 04] KARDOS M., Automation, Information Sharing and Shared Situation Awareness, Review, Australian Government Department of Defence, 2004. [KEL 04] KELLER J., LEBIERE C., SHAY R. et al., “Cockpit system situational awareness modelling tool”, Proceedings of the Fifth Human Performance, Situation Awareness and Automation Conference, Daytona Beach, USA, 22–25 March 2004. [LEB 13] LEBOYER O., Penser le sentiment de confiance dans l’armée : pour un programme de recherche, IRSEM, Paris, 2013. [LEG 00] LE GRAND J.-L., “Définir les histoires de vie. Sus et insus ‘définitionnels’”, Revue Internationale de Psychosociologie, vol. 6, no. 14, pp. 29–46, 2000. [LEZ 14] LEZON-RIVIÈRE A., IHADJADENE M., “Construction de sens et les pratiques informationnelles chez les chefs militaires”, Revue des Interactions Humaines Médiatisées, vol. 15, no. 2, pp. 3–32, 2014. [LEZ 15] LEZON-RIVIÈRE A., “Étude exploratoire sur la place des rôles dans l’analyse des pratiques informationnelles”, Communication & Organisation, vol. 1, no. 47, pp. 161–177, 2015. [LEZ 17] LEZON-RIVIÈRE A., “Confiance et pratiques informationnelles des chefs militaires”, Revue COSSI [e-journal], no. 1, 2017. [LUC 13] LUCKERHOFF J., GUILLEMETTE F., Méthodologie de la théorisation enracinée : fondements, procédures et usages, Presses de l’Université du Québec, Quebec, 2013. [MAB 12] MABRY R.L., APODACA A., PENROD J. et al., “Impact of critical caretrained flight paramedics on casualty survival during helicopter evacuation in the current war in Afghanistan”, Journal of Trauma and Acute Care Surgery, 2012. [MAT 00] MATTHEWS M.D., PLEBAN R.J., ENDSLEY M.R. et al., “Measures of infantry situation awareness for a virtual MOUT environment”, Proceedings of the Human Performance, Situation Awareness and Automation: User Centred Design for the New Millennium Conference, Savannah, USA, October 2000.

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[PUG 02] PUGH D., “A phenomenologic study of flight nurses’ clinical decisionmaking in emergency situations”, Air Medical Journal, pp. 28–36, 2002. [QUE 01] QUERE L., “La structure cognitive et normative de la confiance”, Réseaux, no. 108, pp. 125–152, 2001. [REI 10] REIMER A.P., MOORE S.M., “Flight nursing expertise: towards a middlerange theory”, Journal of Advanced Nursing, vol. 5, no. 66, pp. 1183–1192, 2010. [SAL 06] SALMON P., STANTON N., WALKER G. et al., “Situation awareness measurerement: a review of applicability for C4i environments”, Applied Ergonomics, vol. 2, no. 37, pp. 225–238, 2006. [SAL 08] SALMON P., STANTO N., WALKER G. et al., “What really is going on? review of situation awareness models for individuals and teams”, Theoretical Issues in Ergonomics Science, vol. 9, no. 4, 2008. [SON 00] SONNENWALD D.H., PIERCE L.G., “Information behavior in dynamic group work contexts: interwoven situational awareness, dense social networks and contested collaboration in command and control”, Information Processing and Management, no. 36, pp. 461–479, 2000. [VIT 14] VITALIS V., Évacuations médicales aériennes stratégiques militaires depuis l’Afrique vers la Métropole de 2001–2012. Formation, place et rôle du médecin généraliste au sein de ces évacuations, Thesis, École du Val de Grâce, 2014. [WAL 04] WALKER G.H., STANTON N.A., SALMON P. et al., “Measuring and predicting SA in C4I: development and testing of a refined SA measurement technique, and a new concept for SA prediction”, In Proceedings of the Fifth Human Performance, Situation Awareness and Automation Conference, Daytona Beach, 22–25 March 2004. [WEI 95] WEICK K.E., Sensemaking in Organizations, Sage, Thousand Oaks, 1995. [WIC 08] WICKENS C.D., “Situation awareness: review of mica endsley’s 1995 articles on situation awareness theory and measurement”, Human Factors: The Journal of the Human Factors and Ergonomics Society, vol. 1, 2008. [ZHE 04] ZHENG X.S., MCCONKIE G.W., TAI Y., “Dynamic monitoring of traffic flow: the driver’s situation awareness”, In Proceedings of the Fifth Human Performance, Situation Awareness and Automation Conference, Daytona Beach, 22–25 March 2004.

6 Online Info-Communication Practices in the Face of a Crisis of Trust in Breast Cancer Prevention

6.1. Introduction Cancer prevention is at the heart of public policies in France. Since 2003, under the leadership of President Jacques Chirac, a series of “cancer plans” has been launched by the French government with the aim of fighting against cancer and improving patient care. The third cancer plan (2014–2019)1, is broken down into 17 objectives that translate into operational actions. These objectives are articulated around the plan’s four major ambitions, namely to cure more sick people, to preserve continuity and quality of life, to invest in prevention and research and to optimize management and organizations. It should be noted that in the programming plans of the 11 actions concerning the improvement of cancer screening, we find the following recommendations: access to information, the role of the attending physician and the fight against the social inequalities of access to screening, supervision or limitation of individual screening.

Chapter written by Pierre MIGNOT and Dorsaf OMRANE. 1 Website of the Institut national du cancer, available at: http//www.e-cancer.fr/Plan-cancer/ Plan-cancer-2014-2019-priorites-et-objectifs, accessed on December 20, 2017. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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Moreover, at present, prevention policies and actions are facing several upheavals due to a more global health crisis2. A climate of distrust in experts and health institutions has been gradually established due to the various political and health affairs, conflicts of interest as well as fears aroused by the emergence of diseases, pathologies or viruses that we do not control. We are also witnessing certain scandals in pharmaceutical laboratories (Médiator, Vioxx, etc.) or the proliferation of consumer products considered carcinogenic. Furthermore, forms of individualization of health practices and lifestyle choices, such as the refusal of vaccination [OLL 17] or the call for alternative medicine [ROM 13], are developing. Some practitioners [SAO 09] address a crisis of public trust in the health system. This crisis of trust is not without consequences on the online communication practices of patients and health professionals. By practice we mean the “habits of doing”, in the sense of Jacques Perriault (1989) who mixed both the knowledge and the representations that make it possible to understand and apply them according to the situations. Thus, the practices “cover not only the use of the techniques but also the behaviors, attitudes and the representations of the individuals which relate to the tool” [JOU 93]. Indeed, these information-communication practices are diverse and the sources are varied. Audiences are informed not only by the combined action of associations, mainstream media that now treat health issues critically [ROM 13], but also more recently through the exponential development of online health information and use of digital devices [THO 12]. The prevention of breast cancer comes up against a crisis that results in stagnation, at 52% since 2008, of organized screening rates3, which comes four years after the launch of the organized screening program, which is the main technique of cancer prevention in France. More voices are being heard against screening techniques and calling for prevention that takes into account socio-environmental factors in the fight against cancer [MEN 10]. Paradoxically, we note a variety of actors involved in breast cancer prevention campaigns whether they are institutional, private or associative. Screening is considered in France as a public health service belonging to what Karpik [KAR 07] called the economy of singularities: “singularities are 2 Website of the Institut de recherche en santé publique, available at: http//www.iresp. net/ iresp/files/2013/04/110407134836_qspn-12-crises-sanit.pdf, accessed on December 20, 2017. 3 Website of the Institut national du cancer, available at: http//www.e-cancer.fr/Professionnelsde-sante/Depistage-et-detection-precoce/Depistage-du-cancer-du-sein/Le-programme-dedepistage-organise#toc-le-d-pistage-organis-en-quelques-chiffres, accessed on December 20, 2017.

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immeasurable products of exchange (goods and services). What’s more, the market of singularities is composed of relations marked by the uncertainty of the quality between the singular products and actors in search of the “good singularity” [KAR 07 p. 38]. A construction logically follows on from the difficulties of multidimensional services and subjectivity in the judgment of quality and representations of health service in a context of uncertainty. Two types of uncertainties are revealed in the context of our study: on the one hand, the “strategic uncertainties” related to the choices made by public authorities for prevention and screening programs and, on the other hand, “the uncertainties of the final adjustment” related to public decision-making in situ and upstream before being able to judge the quality of the service (doctor’s choice, cancer screening). In this context, there is a “quasi-trust” as outlined by Louis Quéré [QUÉ 05] or a trust based on Russel Hardin’s theory of “encapsulated interests” [HAR 06]. However, the principle of quiet confidence [QUÉ 01] does not seem to correspond to interactions that evolve in an uncertain political-health context. First, we propose understanding the context of the crisis of trust not only related to the culture of prevention in general, but also to the historical, organizational and communicational specificities of the prevention of breast cancer through its measures and its actors. Then, we will present the research methodology and the main results of our online ethnographic study on the information-communication practices of the population concerned with regard to prevention discourses and, finally, the trusted features of interpersonal or impersonal characteristics created around prevention campaigns online. 6.2. Breast cancer prevention: a strategic uncertainty? The principle of strategic uncertainty, according to Karpik [KAR 07], refers to an arbitrary selection of certain service dimensions that may not correspond to the “interpretive process” of users. Strategic uncertainty, in our study, characterizes the meeting of two “interpretive processes”: that of the public health actors, on the one hand, and the public concerned by the prevention of breast cancer, on the other hand. As a result, we have chosen in this first section to present the context of breast cancer prevention in its cultural, organizational and communicational complexity. How has breast

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cancer prevention evolved since the early 20th Century? What are the stakes of the public, private and associative actors involved in the prevention policy? How far can these uncertainties hinder the achievement of public health communication goals? 6.2.1. Public health communication: toward a culture of prevention? The World Health Organization (WHO) defines prevention as “any act designed to prevent expected phenomena”. The public health approach distinguishes three categories of preventive action. Primary prevention is the set of actions that reduce the occurrence or incidence of a disease. Vaccinating the elderly against influenza or vaccinating children against MMR (measles, mumps and rubella) meets this objective, just like the slogan “eat five fruits and vegetables and practice a sporting activity” is part of the campaign policy of primary prevention against cancer. Secondary prevention is actions that aim to reduce the morbidity or the consequences of a disease once it occurs. Breast cancer screening campaigns for women over the age of 50, as well as colon cancer screening campaigns for the French population aim to identify in the target population those who need to be cared for as early as possible to avoid the progression of the disease that leads to complications and, if possible, to eradicate it in the person with appropriate care. Finally, tertiary prevention represents actions that aim to reduce disability associated with chronic illnesses. With dietary counseling, people with diabetes can reduce the risk of their disability; furthermore, the professional integration of patients in the remission phase or after their recovery is part of this prevention. Since the development of curative medicine, prevention has occupied a secondary role in the French health system. According to Ménoret [MÉN 07], the main concern was to ensure access to care rather than to foster a culture of prevention. Health crises such as those of blood transfusion, growth hormones and the heat waves in the summers of 2003 and 2006 raised public awareness of the notion of “health security” and brought about a new awareness of prevention issues [ROM 13].

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There is also a political and legal context that is “favorable for prevention”. Indeed, the notion of prevention appeared in legislation for the first time in the French Social Security Code thanks to the law of January 5, 1988. It was not until 1998 that the general term of prevention appeared in the French Public Health Code through the Anti-Exclusion Act, which laid down the principle of “regional programs for access to care and the prevention of the most deprived persons”. However, it was the law of March 4, 2002, that recognized prevention as having a leading position in health policy. This law also introduced an innovation in the financing of prevention, conceiving of prevention as a “risk” insurance. Since then, public policies have continually promoted and implemented dynamics to strengthen prevention, supported by the French Ministry of Health. This evolution of the prevention policy refers to the questioning of an exclusively curative vision of health in favor of a global approach to prevention, and the development of a progressive culture, in which the object would no longer be the only risk but the search for health in the sense defined by WHO as “a complete state of physical, mental and social well-being, and not only of absence of illness or infirmity”. Consequently, the actors, discourses and measures of prevention are diversified. It is indeed expected from the prevention campaigns to promote the maintenance of the so-called “normal” behavior or (ultimately) to modify a behavior labeled “at risk”. This creates problems when setting standards, such as those for breast cancer screening from the age of 50, especially when it is a question of not only health itself but also aesthetic values [ROM 13]. The omnipresence and the restrictive effects of prevention have given rise to many criticisms [PER 09] that question this ideology of preventive and highly publicized culture. Among the criticisms, risks are mentioned. The individual wishes to take the initiative to choose to incur the risks or prevent them. The choice to avoid, take or limit them requires solutions other than of an individualistic nature. In these situations, according to some researchers [LOU 04], it is appropriate to organize and articulate individual liberties with collective demands and to arrive at a balance between individual freedoms and general interest. This confrontation of the individual and collective prevention logics has consequences on the perception of certain populations concerned by the prevention of breast cancer, its features and its actors, especially because the latter is often based on campaigns of individualization and empowerment of people labeled “at risk”.

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6.2.2. Breast cancer preventions in question: measures and actors Despite its protean nature, the foundation of breast cancer prevention is now based on a collective early warning order developed as part of organized screening. Campaigns and actions of communication and promotion of this measure are increasingly assured by a diversity of actors. Despite their gradual evolution, since the beginning of the 20th Century, measures and actors have still been giving rise to many questions. 6.2.2.1. Breast cancer prevention over time: a controversial measure Since the beginning of the 20th Century, the American Cancer Society (ACS), like the Ligue Nationale contre le cancer (LNCC) in France, has campaigned for the early detection of cancer. In the late 1930s, a clinical surveillance technique was developed in a practitioner’s office during a medical consultation, based on visual examination and palpation by the expert of supposedly suspicious nodules. The second systematized surveillance technique was self-examination. After 20 years, clinical breast exams and self-examination were integrated by a third screening technique, mammography. From the 1970s, the latter technique was considered a reliable tool for screening asymptomatic populations. It became, in the following decades, a more common medical practice without public consultation [BOI 03, MÉN 07]. It was gynecologists, industrialists and liberal practitioners, including radiologists, who facilitated this dissemination [MÉN 07a]. It was not until the 1980s that mammography became an essential monitoring technique in France. In France, an organized breast cancer screening program (DOCS) was launched in 2004. This program is based on specifications published in the Journal Officiel of December 21, 20064, which defined and regulated its modalities, monitoring and evaluation. All women aged 50–75 years (9.5 million) were called every two years to have a mammogram entirely covered by health insurance. The issues were significant from a public health perspective. More than 22 million mammography screenings were 4 Order of December 29, 2006 on cancer screening programs, available at: http//www. legifrance.gouv.fr/affichTexte.do;jsessionid=3FF7D9D2BFEB7FD55A29E2BFA395F60F.tp dila18v_2?cidTexte=JORFTEXT000000460656&dateTexte=&oldAction=rechJO&categorie Lien=id&idJO=JORFCONT000000006642, accessed on December 20, 2017.

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organized. The five-year net survival rate for breast cancer was 86% for people diagnosed between 1989 and 20045. In 2014, more than half of the women took part in this screening; that is, approximately 2,520,000 women, according to the Inca. In addition to these figures, approximately 10–15% of women had screening mammograms at the physician’s request or on their own initiative, called spontaneous, opportunistic or individual screening (IS)6. Screening, whether individual or organized, is now present in the medical daily life of women aged 50–74 years. Institutions and spaces for information and communication around primary and secondary prevention have multiplied over the years. For more than a century, both breast cancer experts and their official institutions have adhered to the principle of early diagnosis and treatment, which organizes medico-targeted screening standards, but this hegemony is increasingly challenged [JUN 03]. Each screening program is open to debate and, for both the expert and the layperson, questions can be numerous in terms of precision or safety, for example. How many people are likely to be false negatives? What type of effective treatment do we have in order to eradicate the symptoms of the disease being screened? Are these treatments themselves safe? If the treatment seems to be risky, how much should it be imposed on people who, perhaps, would never have developed the slightest symptom? At present, the examination of these questions is reserved for expert judgment [MÉN 07]. Organized screening was challenged long before it was finally established nationwide. The late 1980s saw the emergence of the first divergent opinions, but it was in 2000 that latent controversy really began, continuing to develop until today. In turn, different researchers [JUN 04] and practitioners [BOI 04, VER 07] stated that screenings were useless through studies establishing its ineffectiveness, while others refuted previously issued opinions by affirming its usefulness. The mediatization of these peer-to-peer discussions reinforced the controversy, ultimately increasing the benefit–risk ratio [DEL 16] related to this early warning measure. A militant movement, outside the health framework, against screening arose essentially 5 Website of the Institut national du cancer, available at: http//www.e-cancer.fr/Professionnelsde-sante/Depistage-et-detection-precoce/Depistage-du-cancer-du-sein/Le-programme-dedepistage-organise#toc-le-d-pistage-organis-en-quelques-chiffres, accessed on December 20, 2017. 6 Health figures, available at: http//invs.santepubliquefrance.fr//Espace-presse/Communiques-depresse/2014/Octobre-rose-2014-A-chaque-femme-le-depistage-adapte-a-son-niveau-de-risque.

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in the United States [MÉN 10] and in France, in particular, with the publication in 2011 of the work of Rachel Campergue entitled No Mammo ? Enquête sur le dépistage du cancer du sein. Since then, we have seen individual and collective initiatives heading in the same direction. The citizen and public scientific consultation7 conducted at the French level in 2016 brought about these points of discussion, because it was clear that the objectives set at the beginning of the organized screening program were difficult to achieve. The latter experienced an ever-increasing annual growth, and it was only after four years of conducting the program at the national level that stagnation of the participation rate8 was observed. While 80% of the women concerned were expected to be involved (aged 50–74), those surveyed since 2008 are around 50%. Even if differences are found according to not only territories but also socio-economic groups, the figures are still far from initial ambitions9. In addition, the questioning of the mortality rate, an indicator used to measure changes in the system, does not argue in favor of the program. Indeed, it is now difficult to assert and prove that a possible decrease in mortality following breast cancer is directly linked to the use of screening10. As mentioned above, the report produced after this consultation11 also pointed to the risks associated with screening itself, which can lead to false positives or false negatives, overdiagnosis and overtreatment, and inducing certain risks related to radiotherapy. At the end of this public consultation, the public authorities announced very recently, on April 21, 2017, new measures, notably on information processes, the integration of women older than 25 years into information and monitoring services and the strengthening of the role of general practitioners and gynecologists in information and awareness raising. 7 Website, available at: http//www.concertation-depistage.fr/#donne-avis. 8 Website Santé publique France, available at: http//www.santepubliquefrance.fr/Actualites/ Donnees-de-participation-au-programme-de-depistage-organise-du-cancer-du-sein-20152016, accessed on December 20, 2017. 9 Website Santé publique France, available at: http//invs.santepubliquefrance.fr/Dossiersthematiques/Maladies-chroniques-et-traumatismes/Cancers/Evaluation-des-programmes-dedepistage-des-cancers/Evaluation-du-programme-de-depistage-du-cancer-du-sein/Indicateursd-evaluation/Taux-de-participation-au-programme-de-depistage-organise-du-cancer-du-sein2015-2016, accessed on December 20, 2017. 10 Thoughts all the more necessary as in 2012, in France, approximately 48,800 new cases of breast cancer and 11,886 deaths were identified. 11 To view the final report from the digital contributions: “Ensemble, améliorons le dépistage du cancer du sein”, available at: http//www.concertation-depistage.fr/wp-content/uploads/ 2016/10/concertation-depistage-cancer-du-sein-analyse-contributions-numeriques-juin-2016. pdf, accessed on December 20, 2017.

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These new measures, strongly driven by the INCa12, seem to favor an individualized preventive measure and not one on a mass scale, as has been the case until then. It remains to be seen how these measures will be implemented and perceived, in a few years, both by the population concerned and by health actors. 6.2.2.2. Multiplicity of prevention actors: entangled competencies There is a plurality of actors and, therefore, of logic and interest, in the field of prevention: users, doctors, associations, pharmaceutical companies, local authorities and the State. Multiple interactions between these actors create a real complexity of decision in the field of prevention. In France, prevention skills are shared between the state and local authorities, which does not contribute to the legibility of the entire system. In addition to the competent directorates of the Ministry of Health, many actors (specialized bodies, public or para-public bodies) are involved in the prevention system. Since 1992, the creation of a series of autonomous public agencies and institutions responsible for the sectoral aspects of public health policy13 has been identified. Added to this is the institutional representation of users that appeared in France following the 1996 Juppé ordinances. The public authorities have conferred institutional legitimacy on patients’ associations and on consumer and family associations. A former mutualization movement also affected the more specific actors involved in organizing cancer screening. There are many actors involved closely or from a distance in organized breast cancer screening: health professionals, in direct contact with the population, are in the foreground; the treating physician who plays a pivotal role, is placed at the center of colorectal cancer screening and has a prominent position for organized breast cancer screening. Specialist doctors, gynecologists and gastroenterologists are also involved in these screenings. In addition, BCP prevention and screening are organized in a more global way at the national level, where several actors are involved: Ministry of Health, INCa, the Institut national de veille sanitaire (InVS) and the Haute autorité de santé (HAS); at the regional level, we find the ARS Midi-Pyrenees (Occitanie today), the Groupement régional de santé publique (GRSP) and the 12 The Institut national du cancer [The National Cancer Institute]. 13 The Agence française de sécurité sanitaire des produits de santé (AFSSAPS), the Haut comité de santé publique, which is in charge of defining risks and prevention objectives, the Institut national de veille sanitaire (InVS), the Comité technique national de prévention, the Institut national de prévention et d’éducation pour la santé (INPES), etc.

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Directions régionales des affaires sanitaires et sociales (DRASS); and at the departmental level, we have organized screening for breast and colon cancers in Haute-Garonne (Doc31), for example. The multiplication of institutions could lead to not only entangled competencies, a lack of synergy or lack of coordination but also social inequalities in access to information when raising awareness about prevention and/or organized screening. The INCa report14, mandated by the French National Health Agency to evaluate and reorganize the BCP screening measure, highlighted the heterogeneity of these structures in the expected results and information systems used. The report revealed the need to reorganize the cancer prevention policy. This reorganization must “help to encourage the interfaces between the actors in order to streamline the health care path, to gain in efficiency by optimizing resources and developing the information system between the actors, and finally, to clarify the links between the territorial, regional and national levels” (2016). The challenge is to define a more efficient organization that also preserves the quality of the measures, facilitates access to screening and enables the deployment of actions outlined in the 2014–2019 Cancer Plan. In addition to the institutional actors involved in prevention, it should be noted that the number of companies that have engaged in breast cancer awareness has steadily increased over the years. Estée Lauder, Avon, Komen, Zenox Pharmaceutical, a producer of tamoxifen, the world’s bestselling breast cancer drug, as well as other commercial and non-commercial organizations participate in several events and activities throughout October. This awareness campaign is known in France as “Octobre Rose” or “wear it pink” in the English-speaking world. In October 1994, the Estée Lauder group, in association with Marie-France magazine, created the awareness campaign entitled “Le Cancer du Sein, Parlons-en” [“Breast Cancer, Let’s Talk About It”]. Meanwhile, movements against the exploitation of this cause by industrialists have emerged, such as the movement “think before you pink” launched in 2002 to educate Americans about what they call “pink washing”. The League Against Cancer launched in 2016 a charter15 “Stop 14 “Évolution de l’organisation du dispositif de dépistage des cancers/réponse saisine”, Website of the French Society of Senology and Mammography, available at: http//www. senologie.com/wp-content/uploads/2016/12/evolution-de-l-organisation-du-dispositif-dedepistage-des-cancers_20161207.pdf, accessed on December 20, 2017. 15 Website of the Ligue du Cancer 44, available at: http//www.liguecancer44.fr/actualite/ stop-au-pinkwashing, accessed on December 20, 2017.

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pink washing” in order to sensitize its collaborators against the mercantile and opportunistic excesses of this event: “Pink October has established itself as a public meeting to raise awareness and mobilize against breast cancer, it is a great victory. However, at present, Pink October has become, unfortunately and in many ways, a mobilization often diverted from its objective, a pretext for opportunistic, disorganized or even mercantile communications. This drift tends to annihilate the effectiveness of the message. As a result, participation in organized screening continues to decline every year, reaching only 50.7% in 2016”. Undoubtedly, breast cancer prevention evolves in a context of socio-political and medicinal uncertainty in view of the questioning of its normative ideology, non-individualized and scientifically contrasted measures and a set of actors and entangled competencies that barely meet their “goals”. Moreover, it is difficult to understand these uncertainties without reflecting on individual behavior in the face of health risks and on their perceptions and practices within this uncertain context of prevention. In organizing this reflection, the contribution of the social sciences and humanities and the information and communication sciences in particular seems undeniable. They make it possible to provide a theoretical and methodological frame of reference for the perception and the individual and collective representations with regard to BPS prevention measures. 6.3. Online info-communication practices of the population concerned by breast cancer prevention The framework of the strategic uncertainty of breast cancer prevention, discussed below, shows that the cultural, historical and organizational context of breast cancer prevention is not without consequences on the representations and practices of the population concerned. In addition to the contribution of contextualization, our research also focused on understanding what the breast cancer population thinks about prevention discourses. As part of this study, we aimed, through the analysis of online informationcommunication practices of the breast cancer population, to understand their representations and perceptions, and we asked ourselves, in particular, whether they trust institutional discourses on prevention.

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6.3.1. Methodological choices for the analysis of an online exchange area Health research via the Internet has increased over the past 15 years with the development of the Internet itself and mobile technologies by the population and caregivers. A field of study has been established, which is referred to as e-health studies [KIV 16]. Whether quantitative or qualitative, studies in the humanities and social sciences of the health field on the Internet offer new opportunities to the researcher [THO 16]. As far as we are concerned, this study made it possible to have a follow-up of our corpus for two years (2015 and 2016), not being restricted to a geographical area (anyone interested in the subject could take part), going to seek the people concerned where they are (the choice of exchange space), whether they were anonymous or not (anonymity allowing the participants to take part freely), being in contact with participants in order to complete this study (interview, focus group, etc.). We collected textual data, videos and images. We were also interested in digital traces like emojis on Facebook, and shares. We also counted the number of messages, contributions, likes of shared content and subscribers. 6.3.1.1. Delimitation of the framework After the identification and exploration stage of different exchange places concerning breast cancer and its prevention, we found it important to delimit our study space. We decided to analyze the Facebook exchange group “Cancer du sein, parlons-en” for several reasons that were primarily related to its relevance to the theme studied, the large number of contributions compared to other areas identified and, finally, the link which could have the editorial choices of this space with the founder at the origin of this one, which is the group Estée Lauder [OMR 16]. Founded in New York in 1946, the Estée Lauder company, which specializes in cosmetics, is internationalizing and rapidly diversifying its range of products. Starting in 1992, the family business, on the initiative of Evelyn H. Lauder, vice-president of the global group Estée Lauder, co-authored “The Pink Ribbon” with Self Magazine, which became the largest campaign against breast cancer. The following year, in 1993, the company established the Breast Cancer Research Foundation (BCRF) in the United States to support innovation in clinical and genetic research. In

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October 1994, the cosmetics group, Estée Lauder France, joined forces with Marie Claire magazine to find the association “Le Cancer du Sein, Parlons-en”. The association is ubiquitous on social media (Facebook, Twitter, discussion forums). In this study, we are interested in one of its features: the Facebook page of the association “Le Cancer du Sein, Parlons-en”16. We analyzed the content of this page during the “Pink October” event. This digital measure was created in 2009, and it is “tracked” today by 724,963 people17. Our corpus is limited to the messages published by the association in October 2015 and 2016, i.e. 80 subjects and an average of 50 comments per subject, i.e. a body of approximately 4,000 texts. It should be noted that “the organization of exchanges” [AKR 09] on “Le Cancer du Sein, Parlons-en” is distinguished by the very characteristics of the Facebook social network. The content is initiated entirely by the association’s community manager; nevertheless, this content is often relayed and not produced. In terms of interaction, the initial content generates, on average, hundreds of “likes” and “shares” as well as approximately 50 comments. Discussion threads are varied and may not be related to the original subject. The participants are mostly females receiving treatment, in remission or those who are close to a cancer patient18. Stakeholders connect mostly with their Facebook account and their own identity. 6.3.1.2. Non-participative online observation We decided for this study phase to make non-participant observations. Indeed, we found it difficult and intrusive to contribute to the group’s discussions, although this could be done in a more targeted way in the next stage of the study. We engaged in an invisible ethnography [KIT 07] without declaring our presence and without possibly impacting the results of our research.

16 This analysis is part of a more global study on the socio-digital devices of prevention against breast cancer (field observation, interviews and analysis of the contents of a corpus RSN concerned by this question). Study conducted during the “Pink October” event from October 1 to 31, 2015 and 2016. 17 Cancerduseinparlonsen.com is one of the most popular and most active social networking devices on breast cancer for our study. 18 Male breast cancer is rare. Less than 1% of all breast cancers affect men. In our corpus, we have spotted a single testimony of a male patient with breast cancer.

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In order to avoid being overwhelmed by the amount of data and without restricting our field of observation, we relied on an observation grid. This was constructed thanks to the first exploratory observations of the exchange space. It took into account the elements of uncertainties around prevention identified in the literature presented below and remained obviously open to incorporating elements emerging from the observation. The themes that we initially identified for these observations concerned the type of prevention (primary, secondary, tertiary); the publisher of the message; the reference to the history and evolution of prevention; the type of discourse and its references; the perceptions and practices related to the prevention discourse; participant profiles and, finally, the identification of the subject of the following words or their synonyms: trust, distrust, risk and uncertainty. 6.3.1.3. Using NVivo software NVivo is a data analysis software, which is used to analyze all the publications and comments on the Facebook page of the association “Le Cancer du Sein, Parlons-en” since its creation. The basic analysis principle of the NVivo software is what Tesch [TES 13] describes as a process of decontextualization-recontextualization of the corpus. This decontextualization consists of removing an extract of the text from its context. It is about making it semantically independent and creating categories or themes around topics. Recontextualization is, therefore, the analysis of codes in order to give meaning to the analysis produced. In the framework of this study, we limited ourselves only to a comparison of the results of this global and automatic analysis to our results of the qualitative analysis of the restricted content in October 2015 and 2016. 6.3.2. Two trust measures: between judgment and promises While “trust makes it possible to turn problematic commitments into credible commitments” according to Karpik [KAR 07], two sets of trust measures are at work. Measures of judgment can reduce “ignorance”; they are based on either interpersonal trust (the network) or impersonal trust (rankings, designations, certifications, expertise, etc.). These measures make

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it possible, according to the author, to counteract the risk of opportunism; they include the quality of people, the network or normative sets, such as the unilateral standard of lawyers, the co-produced standard of the partnership or the technical standard. Observation and content analysis of our field revealed two measures of trust between the population affected by cancer and the actors involved in prevention campaigns (doctors, associations and institutions): an interpersonal measure based on support between the population affected by breast cancer through which experiences and knowledge circulate and an impersonal measure based on skills and standardization and conveyed in prevention campaigns. 6.3.2.1. From social support to trust in the health system Content analysis using NVivo software (Figure 6.1) allowed us to consolidate one of our first online observation results. Indeed, this space for prevention against breast cancer reveals activities characteristic of online social [GAU 12] or emotional [THO 12] support. Online social support varies according to the media used and does not resemble, in all cases, social support between relatives (no prior intimacy) or the group of words (the institution is not necessarily at the origin and we do not necessarily find animation). The researchers on online social support have reproduced the definitions and the typology of traditional social support [BAR 94, WAL 02], as reported in the review of Gaducheau’s literature [GAD 12] devoted to this topic. Indeed, “social support consists of an exchange of messages that convey emotions or information to help reduce someone’s uncertainty or stress, and that directly or indirectly signals to this person that we recognize her value and that we take care of her” [GAD 12, p. 96]. We also find the same typology of online social support: informational, emotional, evaluative and tangible. Indeed, in a context of uncertainty described above, this exchange space initially dedicated to the prevention and awareness of early detection becomes a social support device generating, not without interest for its publishers, an abundance of content.

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Figure 6.1. Word Cloud. The key words obtained by the study of online social support include: women, thank you, breast, cancer, courage, me, disease, pink, chemo, life. For a color version of the figure, see http://www.iste.co.uk/paganelli/confidence.zip

The lexical analysis we conducted confirmed the virtual absence of the words prevention and screening. On the other hand, we found words belonging to the register of emotional support that are used to describe the contribution of comfort, friendship, love or sympathy [BAR 02]: courage, bravo, thank you, moral, fight, fear, strength, beautiful and photo. We also found in the analysis of our corpus expressions such as “it will be okay”, “hope”, “you have to live”, “you are not alone” and “fight”. One of the peculiarities of this lexicon of emotional support lies in the presence of a warlike vocabulary. It is a “war” against the disease that would imply a cohesion between the different actors. Informational input could be helpful in solving the problem, making decisions and judgments about a medical diagnosis, a treatment process or screening, etc. The most common words in this register are treatment, chemo, radiotherapy, removal and reconstruction. This support is not just about medical information or opinion. Aesthetics, social environment, sexuality or post-cancer can be the subject of these informational exchanges. Finally, even if the material aid was not identified as such in this study, the tangible support can be manifested through interpersonal links that are created between the speakers (in addition to the list of Facebook friends, nominative requests for news, invitation to a conference or training on taking care of one’s body, etc.). In fact, these social support activities are not distinct or sequential. We can find in the same message a person who reacts emotionally to a photo

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(photo awards) by referring to her problem (a recurrence or non-acceptance of a bodily change), which triggers messages of emotional support, encouragement or an experience story containing information and advice. It should be noted that the intervention of community managers is very rare in the context of social support. These invisible links that form in these exchange spaces gradually become strong links of knowledge transmission resulting from personal experiences. This knowledge can lead to a decision or judgment about a health program. Trust is gained not through medical and scientific information provided by health actors but through interpersonal exchanges that can reduce or accentuate both types of uncertainty: strategic and final adjustment. 6.3.2.2. Online breast cancer prevention campaigns: a trusted impersonal measure The impersonal trust measures in the health system are based on standards, certification or simply trust in the skills of health professionals [KAR 08] and institutional discourse. We distinguished three discourse approaches in prevention campaigns. It should be recalled that the incentive discourse in the 1980s, at the beginning of screening, was exclusively discourse delivered by liberal doctors, unlike in the United States, for example, where these discourses were reproduced by pressure groups made up of women representing the educated middle classes, white and without particular problems [MÉN 06]. Prevention discourse in France mainly comes from institutions, whether public, private or associative, as explained above. The analysis of our corpus revealed three types of approaches in the content of breast cancer prevention campaigns. In order to structure them, we refer to Simpson’s categorization [SIM 00]: the pharmacological and technological belief, the individual responsibility of health and, finally, the alliance between health and society. 6.3.2.2.1. The technico-medical approach: “encapsulated” interests The impersonal trust measure is based here on a sustained belief in technological and pharmacological solutions. This “ideology of technology” is even more important when it comes to breast cancer, where the chances of recovery are minimal. Believing and trusting in technical and medical prowess is a way to hope for a better outcome of the disease and prevention

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techniques. The contents of the technico-medical approach answer technical questions about the disease. It aims to study the drug approach and more generally the substances likely to act on the body. This is a delegation report: patients rely on devices based on voluntary dependence, in turn, based on trust. From this measure of judgment emerges, therefore, a kind of symbolic authority based on which the choices are made. Thus, some women, in the context of early detection, will either comply with the medical authority (compliance) or voluntarily rely on mammography screening, genetic testing or even taking anti-cancer drug products, although they are not entirely harmless. The interests of multinational corporations to promote this perspective are far from trivial. Despite the “final adjustment” uncertainties, the population targeted by these prevention discourses trusts the prevention and screening program. The interests of the promoters of the screening technique, whether they are the State, the pharmaceutical laboratories or the medical profession, fit together or are encapsulated, to use the expression of Russel Hardin, taken again by Quéré [QUÉ 01], with the interests of a population that wants to protect itself or to cure an illness. The analyzed corpus focuses on this prevention approach by publishing and implementing specialized medical interventions: “Today, 90% of early-stage breast cancers are cured!” The reference is made here to a study carried out on the consequences of screening. The association also announced that a doctor would be present on the forum to answer strictly medical questions including: “We called on a doctor to answer questions: double mastectomy, genetic mutations, antibiotic, breast removal, diagnosis, MRI, examination, ultrasound, female sex hormones” (CM, October 2016). While advances in the field of disease detection are often reflected in the content of the editorial line of the exchange space, the automatic extraction of co-occurrences from the word screening demonstrates a link with that of “the scientific practice”, “knowledge of the breast” and “means of finding smaller and smaller tumors”, which are technical questions often raised in comments. More generally, women who opt for the organized system (OS) have confidence because of the double reading of the results. However, this impersonal trust has its limits, since those who choose individual screening (IS) consider it more reliable than organized screening, which is less anonymous and allows them to be freer to manage their health [KAL 15]. In

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addition, the trust in professional expertise, the attending physician or the gynecologist, often plays a decisive role in the choice of screening method. 6.3.2.2.2. The approach of empowerment and individualization of prevention In this impersonal trust measure, the second approach to prevention is the individual responsibility of health. This position is most often in terms of lifestyle choices and encourages just as much, for example, to quit smoking, to exercise and eat healthily, as well as to adhere to the principles of early detection. The studies [KAL 15, MAZ 09] highlighted a differentiated relationship to screening according to female social origin. The participants in individual screening are met “in favored areas”. These women have, for the most part, a level of higher education and are working. They are involved more in a preventive culture approach: controlling their health and staying healthy. Women from rural and/or disadvantaged backgrounds have an approach to prevention guided by fear of illness and death. They believe that screening can make the care journey less complex and change the outcome of the disease. The profile of women participating in IS is similar to the “typical profile” described by Bertolotto (2003) as a woman who is a “mistress of her destiny”. From other studies comes a third profile, that of a female from a rural and/or disadvantaged background, but in contact with the health system and who adheres to the OS system [KAL 15]. Although this approach is reassuring for some women and reflects their relationship with health and the body and their sensitivity to the issue of prevention, it is challenged by researchers and other patients. Indeed, this approach of empowerment and individualization promotes a short-term prevention perspective. Thus, focused on the behavior of individuals, this process should be repeated for each generation [MÉN 06]. In addition, individualization of risk and accountability in prevention campaigns are challenged in scientific literature [SWE 14]. Corpus analysis shows that primary prevention messages concerning risk factors (diet, sports activity, lifestyle) were very rare (two out of 40 in October 2015). We found that these messages caused very little interaction but several shares. If the interactions are not frequent, they are often critical and sometimes close to derision: “[...] I have a varied and “balanced” diet, I do sport. No alcohol abuse. So why? Why an outbreak of cancer? Difficult to

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know”; “[...] well it will take a lot of fatty and sweet cakes and a lot of champagne to forget about it!!!! Not during chemo of course [smiley emoticon]” (October 27, 2015 interactions). The secondary prevention messages here concern early detection, visual aids in the form of posters or videos. The interactions around these messages are only between the patients, and the public concerned by screening does not participate. Primary prevention messages of empowerment and individualization are often diverted into stories of experiences. Interactions here relate to the screening experiment and self-examination. 6.3.2.2.3. The socio-environmental approach On the contrary, the third approach emphasizes a long-term perspective by jointly examining both disease and society: “When other options commit us to thinking of breast cancer as primarily a personal and/or medical problem, this one opens us up to heuristic dimensions that it would be time to address today” [MÉN 06]. The first two approaches to prevention have a great reputation and frame the medicalization process of reducing the risk of cancer and the building of public trust. The third approach, which should link the disease to collective socio-economic and environmental determinants, is less present in breast cancer prevention campaigns, although it is increasingly sought by the concerned and untrusting population. The definition of the environment includes the physical, chemical and biological agents present in the atmosphere, water, soil or food, to which individuals may be exposed in different places of life. The assessment of the links between cancer and environmental factors is tricky, and above all very controversial. The impact of environmental changes and eating habits on humans and, more specifically, on the observed increase in certain cancers has become a major public health concern and is part of “strategic uncertainties” regarding risk factors19. As for socio-economic factors, there is growing criticism of the agri-food, pharmaceutical and cosmetic industries. This situation is exacerbated when these same industrial players participate in breast cancer prevention campaigns. For example, Zeneca Pharmaceutical, the world’s largest seller of anti-cancer drugs, is also a major producer of pesticides and other deleterious products known to be particularly carcinogenic [MÉN 10].

19 Léon Bérard Cancer Center, available at: http//www.cancer-environnement.fr/144Sein.ce.aspx#Les_facteurs_de_risques_environnementaux, accessed on December 20, 2017.

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This opacity and opportunism that characterize market exchanges [KAR 96] are sources of conflicts of interest in the health sector and increase uncertainty and lack of trust in the health system and its actors. In the same vein, some patients are upset when the association “Le Cancer du Sein, Parlons-en” partners with a brand producing sanitary pads likely to be carcinogenic: “The moment is very badly chosen to advertise a brand of hygienic protection whose products probably contain a substance classified as carcinogenic20”, “Yes, after “green washing”, the “pink washing”!” (October 29, 2015 interactions). It is in another socio-economic register that patients criticize the events that took place during the “Pink October” campaign. Indeed, the two key moments of the “Pink October” period that have been advertised were the photo contest and the opening ceremony of the 20th campaign of the association in October 2015. On this occasion, there was the ceremony of the “Pink Ribbon” prize, 200,000 euros collected, the illumination of the Eiffel Tower and the invitation of “people”. The ceremony’s video was published, and it generated much interaction between indignation and thanks, but it still generated more than 1,300 “likes” and as many “shares”. Participant 1: “Lots of celebrities, but where are the sick? Their daily lives are a lot less pink!”; Participant 2: “It’s ugly to use an illness to sell, make anonymous and direct donations, ... COMMISERATIONS”; CM21: “?? Know that thanks to our partners and also to private donations we have donated nearly 2 million euros to research”; Participant 5: “Ok and how advanced is your research so far? Where is your money in detail and why exactly? Why do you not have preventive measures in regards to food? ...” (October 2015 interactions). These exchanges reveal a lack of trust in the presence of brands and the publicization of their actions in prevention campaigns. In this context, we might wonder about the risks of CSR communication of these companies in digital mediation [OMR 16] and once again market opportunism in the health sector, which hinders the construction of trust.

20 Available at: mrmondialisation.org/85-des-tampons-hygieniques.../. 21 Community manager of the Facebook page.

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6.4. Discussion and conclusion The cultural, historical and organizational context of breast cancer prevention revealed two types of uncertainties: “strategic uncertainties” about prevention program choices and “final adjustment uncertainties” about the judgment of this program and the screening decision taken by the population concerned. In addition, by analyzing the individual participation factors or non-participation in screening, which concerns the majority of sociological or public health studies, our approach looked at what the population concerned by breast cancer thinks about prevention campaigns as well as its online information-communication practices. On the basis of Lucien Karpik’s analysis grid [KAR 07], on a user’s trust measures, the content analysis of the Facebook page of a breast cancer association has allowed us to identify two trusted measures: an interpersonal measure based on social support and an impersonal measure based on practices related to the discourse of prevention campaigns. Three approaches to communication campaigns around breast cancer prevention have been updated. The technico-medical approach revealed the encapsulated interests of the actors involved in prevention and the population concerned: medico-technical content, placing confidence in a population that wants to believe in the feats of medicine. This population also plays an intermediary role in the mediation process of this content. On the contrary, the approaches of empowerment and individualization, very present in the context of prevention, even if they correspond to a certain population, are often diverted (contributions that evoke other subjects) or criticized satirically or by invoking other references that contradict the initial prevention message. Finally, the third socio-environmental approach is the least present, although it is regularly mentioned in our corpus. Stakeholders deny any accountability and individualization of breast cancer risk factors considering those as collective and not individual. The publicization and media coverage of events as well as the presence of brands in prevention campaigns are also sources of criticism and uncertainty about the credibility of both preventative action and the intentions of the brand. Moreover, an American study [BEN 11] on online spaces about breast cancer showed the proliferation of spaces dedicated to foundations, to the detriment of spaces dedicated, for example, to social support. Moreover, in a context of uncertainty, interpersonal measures of trust through social

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support, knowledge sharing and life stories are increasingly important. They are revealing of shared representations online and especially those related to the uncertainties with regard to the promotion of health in general and the prevention of breast cancer in particular. Indeed, medical information on the social network marks the advent of a user who questions the boundaries of expertise and values lay expertise based on “experiential” knowledge [FRA 12, PAG 14]. Faced with the medical profession and public institutions that evoke the disease differently, we have found that, for the individual, relationships with others are at the heart of discourses, lifestyles, social identities and experiences. Trust seems to co-construct itself through a process rooted in individual realities and social support between those involved in breast cancer. At the same time, public authorities still struggle to control prevention campaigns and the communication of health crises in general [OLL 15] (the latest one concerns the Levothyrox affair). It seems to us that these communication strategies are far from being adapted to the online information-communication practices of the population concerned (social links, sharing of experiences, life stories, mediation, etc.), but they offer new perspectives to prevention and promotion of health in general. In this context of a crisis of trust, the public and official players in breast cancer prevention and screening should orient their communication strategy toward digital platforms involving the population concerned, beyond medico-technical discourses, or individual accountability of the population concerned. 6.5. References [AKR 09] AKRICH M., MEADEL C., “Les échanges entre patients sur l’Internet”, La Presse Médicale, vol. 38, pp. 1484–1490, 2009. [BAR 94] BARNES M.K., DUCK S., “Every communicative contexts for social support”, in BURLESON B. et al. (eds), Communication of Social Support: Messages, Interactions, Relationships and Community, pp. 175–194, Sage, Thousands Oaks, 1994. [BAR 02] BARRERA M., “Do internet-based support interventions change perceptions of social support? An experimental trial of approaches for supporting diabetes self-management”, American Journal of Community Psychology, vol. 30, no. 5, pp. 637–654, 2002.

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[BAR 07] BARREAU B., “La communication vers les femmes et leur information”, dans SÉRADOUR B. (DIR.), Le dépistage du cancer du sein: un enjeu de santé publique, pp. 171–184, Springer Science & Business Media, Berlin, 2007. [BAR 09] BARBARA L., From Pink to Green: Disease Prevention and the Environmental Breast Cancer movement, Rutgers University Press, New Brunswick, 2009. [BAR 14] BARTHE Y., CALLON M., LASCOUMES P., Agir dans un monde incertain. Essai sur la démocratie technique, Le Seuil, Paris, 2014. [BEN 11] BENDER L.J., JIMENEZ-MARROQUIN M.C., JADAD R., “Seeking support on facebook: a content analysis of breast cancer groups”, Journal of Medical Internet Research, vol. 13, no. 1, p. e16, 2011. [BOI 03] BOISSONNAT V., Un “objet-réseau”: la radiographie de dépistage du cancer du sein, in GENEVIÈVE CRESSON et al. (eds), Coopérations, conflits et concurrences dans le système de santé, pp. 47–73, 2003. [BOI 04] BOISSONNAT V., “Fausses évidences et vrais dilemmes en santé publique : le dépistage radiologique des cancers du sein”, Santé publique, vol. 16, no. 1, pp. 9–20, 2004. [CAL 04] CALVEZ M., La prévention du sida : les sciences sociales et la définition des risques, Presses universitaires de Rennes, Rennes, 2004. [COU 09] COURBET D., BERNARD F., JOULE R.V. et al., “Communication numérique engageante et protection de l’environnement : effets immédiats et différés sur les comportements, l’attitude et la mémorisation”, 3e Colloque International Psychologie Sociale et Communication, Tarbes, France, 22–24 June 2009. [COU 13] COURBET D., FOURQUET-COURBET M.P., BERNARD F. et al., “Communication persuasive et communication engageante pour la santé. Favoriser des comportements sains avec les médias, Internet et les serious games”, in BLANC N. (ed.), Publicité et Santé: des liaisons dangereuses ? Le point de vue de la psychologie, Éditions In Press, Paris, 2013. [DEL 16] DELALOGE S. et al. “Dépistage du cancer du sein : en route vers le futur”, Bulletin du Cancer, no. 103, pp. 753–763, 2016. [DOL 09] DOLBEAULT S., BLAY J.Y., EISINGER F. et al., “Cancers, cultures et pratiques de soins”, Freins et Motivations au Dépistage des Cancers du sein : Quels Profils Typologiques ? Résultats issus de l’enquête ÉDIFICE, XXVe Congrès de la SFPO, Psycho-oncologie, vol. 3, no. 1, pp. 60–62, 2009. [DUP 07] DUPORT N., ANCELLE-PARK R., BOUSSAC-ZAREBSKA M. et al., Facteurs d’adhésion au dépistage organisé du cancer du sein : étude FADO-sein, Institut de veille sanitaire, Saint-Maurice, 2007.

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[FRA 12] FRANCEQUIN G., Cancer du sein : une féminité à reconstruire, Éditions Érès, Toulouse, 2012. [GAU 12] GAUDUCHEAU N., “Internet et le soutien social”, in THOËR C., LEVY J.J. (dir.), Internet et santé, usages, acteurs et appropriations, Presses de l’Université du Québec, Quebec, 2012. [GIO 12] GIORDANO L., VON KARSA L., TOMATIS M. et al., “Mammographic screening programmes in Europe: organization, coverage and participation”, Journal of Medical Screening, vol. 19, no. 1, pp. 72–82, 2012. [GOR 09] GORZA M., SALINES E., DANZON A. et al., Programme de dépistage du cancer du sein en France : résultats 2006, Report, Institut de veille sanitaire, 2009. [HAR 06] HARDIN R., “Communautés et réseaux de confiance”, in OGIEN A., QUÉRÉ L. (eds), Les Moments de la confiance, Economica, p. 91, 2006. [INC 13] INCA, Bénéfices et limites du programme de dépistage organisé du cancer du sein. Quels éléments en 2013?, available at: http://www.e-cancer.fr/content/ download/64036/575100/file/Benefices-limites-du-programme-de-depistage-cancersein2013.pdf, 2013. [JOU 93] JOUËT J., “Pratiques de communication et figures de la médiation”, Réseaux, vol. 11, no. 60, pp. 99–120, 1993. [JUN 03] JUNOD B., MASSÉ R., “Dépistage du cancer du sein et médicalisation de la santé publique”, Santé publique, vol. 15, no. 2, pp. 125–129, 2003. [JUN 04] JUNOD B., MASSÉ R., QUÉLIER C., “Cancer du sein : danger des certitudes prétendues”, Santé Publique, vol. 16, no. 1, pp. 21–26, 2004. [KAL 15] KALECINSKI J., RÉGNIER-DENOIS V., OUÉDRAOGO S. et al., “Dépistage organisé ou individuel du cancer du sein ? Attitudes et représentations des femmes”, Santé Publique, vol. 27, no. 2, pp. 213–220, 2015. [KAR 96] KARPIK L., “Dispositifs de confiance et engagements credible”, Sociologie du Travail, no. 38, pp. 527–550, 1996. [KAR 07] KARPIK L., L’économie des singularités, Nrf – Gallimard, Paris, 2007. [KAR 08] KARPIK L., L’économie des singularités, Nrf – Gallimard, 2008. [KHA 14] KHAYAT D., Prévenir le cancer, ça dépend aussi de vous, Odile Jacob, Paris, 2014.

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[KIV 16] KIVITS J., Les recherches qualitatives en santé, Armand Colin, Paris, 2016. [LOU 04] LOUBIÈRE S., PARENT A., TALLON J.M., “L’économie de la prévention : enjeux et problématiques”, Revue Economique, pp. 831–847, 2004. [MAR 10] MARCHIOLI A., COURBET D., “Communication de santé publique et prévention du sida. Une expérimentation sur l’influence de mini-actes engageants via Internet”, Hermès, La Revue, vol. 3, no. 58, pp. 167–174, 2010. [MAR 10] MARCHIOLI A., La communication d’action et d’utilité sociétales : étude de la production et de la réception de la communication médiatique préventive du sida. Perspectives ouvertes par la communication engageante, Thesis, p. 275, Aix-Marseille University, 2010. [MAZ 09] MAZET P., Motifs de participation et de non participation au dépistage du cancer. Enquête qualitative auprès des habitants de deux territoires de l’agglomération grenobloise, October 2009. [MEA 14] MEADLE C., “Partager ma propre opinion”, Le Temps des médias, no. 23, pp. 128–140, 2014. [MÉN 06] MÉNORET M., “Prévention du cancer du sein : cachez ce politique que je ne saurais voir”, Nouvelles Questions Féministes, vol. 25, no. 2, pp. 32–47, 2006. [MÉN 07a] MÉNORET M., “Incertitude médicale et rhétorique statistique en cancérologie”, Sciences Sociales et Santé, vol. 25, no. 1, pp. 33–54, 2007. [MÉN 07b] MÉNORET M., “Le risque de cancer du sein en France : un mode unique de prévention”, Sociologie et Sociétés, vol. 39, no. 1, pp. 145–160, 2007. [MÉN 10] MÉNORET M., “Objets ici, actrices là-bas. Les patientes françaises, passagères clandestines d’un mouvement social du cancer du sein”, Pratiques, no. 49, pp. 32–36, 2010. [OLL 15] OLLIVIER-YANIV C., “La communication publique sanitaire à l’épreuve des controverses”, Hermès, La Revue, vol. 73, no. 3, pp. 69–80, 2015. [OMR 16] OMRANE D., “Médiation numérique de la Responsabilité Sociale d’Entreprise : prévention contre le cancer du sein”, Revue française des sciences de l’information et de la communication, no. 9, 2016. [OUÉ 15] OUÉDRAOGO S., DABAKUYO-YONLI T.S., ROUSSOT A. et al., “Dépistage du cancer du sein dans treize départements français”, Bulletin du Cancer, vol. 102, no. 2, pp. 126–138, 2015.

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[PAG 12] PAGANELLI C., Une approche info-communicationnelle des activités informationnelles en contexte de travail : Acteurs, pratiques et logiques sociales, Thesis, Grenoble University, 2012. [PAG 14] PAGANELLI C., CLAVIER V. et al., “S’informer via des médias sociaux de santé: quelle place pour les experts?”, Le Temps des Médias, no. 2, pp. 141–143, 2014. [PAI 07] PAILLIART I., STRAPPAZZON G., “Les paradoxes de la prévention des cancers : publicisation et privatisation”, Questions de Communication, pp. 17– 31, 2007. [PER 09] PERETTI-WATEL P., MOATTI J.P., Le principe de prévention, Le Seuil, Paris, 2009. [QUÉ 01] QUÉRÉ L., “La structure cognitive et normative de la confiance”, Réseaux, no. 4, pp. 125–152, 2001. [QUÉ 05] QUÉRÉ L., “Les ‘dispositifs de confiance’ dans l’espace public”, Réseaux, vol. 4, no. 132, pp. 185–217, 2005. [REN 05] RENAUD L., “Internet et la promotion de la santé”, in THOËR C., LEVY J.J. (ed.), Internet et santé, usages, acteurs et appropriations, Presses de l’Université du Québec, Quebec, 2011. [ROM 13] ROMEYER R., MOKTEFI A., “Pour une approche interdisciplinaire de la prévention”, Communication & Langages, pp. 33–47, 2013. [RUS 06] RUSSEL H., “Communautés et réseaux de confiance”, in OGIEN A., QUÉRÉ L. (ed.), Les Moments de la Confiance, Economica, Paris, p. 91, 2006. [SAO 09] SAOUT C., “La crise de confiance dans le système de santé”, Les Tribunes de la Santé, no. 1, pp. 119–132, 2009. [SIM 00] SIMPSON C., “Controversies in breast cancer prevention”, in POTTS L. (ed.), Ideologies of Breast Cancer. Feminist Perspectives, St. Martin Press, New York, pp. 131–152, 2000. [SWE 14] SWEENEY E., “The individualization of risk and responsibility in breast cancer prevention education campaigns”, Policy Futures in Education, vol. 12, no. 7, pp. 945–960, 2014. [TES 13] TESCH R., Qualitative Types: Analysis Typ., Routledge, London, 2013. [THO 12] THOËR C., “Les espaces d’échange en ligne consacrés à la santé : de nouvelles médiations de l’information santé”, in THOËR C., LEVY J.J. (eds), Internet et santé, usages, acteurs et appropriations, collection santé et société, Presses de l’Université du Québec, Quebec, pp. 57–91, 2012.

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[THO 14] THOËR C., LEVY J.J., Internet et santé, usages, acteurs et appropriations, Presses de l’Université du Québec, Quebec, 2014. [THO 16] THOËR C., MILLERAND F., “Internet comme terrain d’investigation et mode de collecte des données qualitatives en santé”, in KIVITS J. (ed.), Les Recherches Qualitatives en Santé, Armand Colin, Paris, pp. 151–164, 2016. [VER 07] VERNET A., HENRY F., “Prévention du cancer du sein et facteurs psychosociaux”, Le Journal des Psychologues, vol. 4, no. 247, pp. 54–57, 2007. [WAL 02] WALTHER J.B., BOYD S., “Attraction to computer – mediated social support”, in LIN C.A., ATKIN D. (eds), Communication Technology and Society: Audience Adoption and Uses, Cresskill, Hampton Press, New York, pp. 153– 188, 2002.

7 Trust between Constraints and Limitations of Information Behaviors Among Public Health Policy Actors: The Case of Music Therapy

7.1. Introduction In this chapter, we study the information-communication mediation processes of a little-known and recognized health care practice on the public policy scene and in the French health system: music therapy. Based on a selection of digital documents extracted from a significant body of work and elements of analysis referring to our doctoral research in ICS, we propose studying the information behaviors of some institutional actors of public health policies that use digital devices to produce content on music therapy and disseminate it over the Internet. Indeed, this content brings about some uncertainties concerning this specialty that can interfere on the one hand with its therapeutic dimension and the definition of its application fields, and on the other hand with the trust a priori necessary to construct a therapeutic relationship.

Chapter written by Nathalie VERDIER. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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7.2. Context of emergence of the question of trust: the case of music therapy Since 1977, French universities have been training music therapists,1 with a three-year course leading to a university degree [diplôme universitaire] (DU), quite similar to other degrees in nursing professions, such as the State Diploma [diplôme d’Etat] (DE) for occupational therapists, or the more recent diploma to be a psychomotor therapist. After 40 years of existence, this DU was the subject, in October 2016, of a registration on the Répertoire national des certifications professionnelles [National Directory of Professional Certifications] (RNCP). On the other hand, it does not appear, in the same way as DEs, on the repertoire of professions in the hospital public service. Indeed, the state grants certain prerogatives to universities that allow them the creation and operation of many DUs. These diplomas can be relatively expensive for learners, especially as they fall within the framework of regional and national agreements concerning continued education. They are a factor of profitability for universities, even if it remains relative. Each year, these diplomas also expose a growing number of graduate music therapists to the rules of a health system that does not recognize this profession, if one refers to the French Ministry of Health and some parliamentary documents. However, in political discourse, this care practice is clearly identified: “Music therapy involves using music as a mediation support in the context of a care oriented towards a person’s well-being in their environment”.2 The use of music therapy is stated as “a reality, especially in psychiatry and geriatrics”.3 This paradoxical situation questions trust between public policy actors, and at least between the French Ministries of Higher Education, Health and Labor, Employment and Social Dialogue. It also questions the uses that these actors make of digital devices which are supposed to enable inter-ministerial information-communication, and even that of the institutional players who train in music therapy or those in the field, who seek it in psychiatry and geriatrics as a care practice. 1 Website of the Paul-Valéry Montpellier 3 University, available at: http//musicotherapie. upv.univ-montp3.fr/page-d-exemple/, accessed on March 10, 2017. 2 Response of the French Ministry of Labor, Employment and Health to the written question no. 17383 of Jacques Bascou, PS deputy, to the Government, [online], published in the Journal Officiel on 03/15/2011, available at: http//questions.assemblee-nationale.fr/q13/1317383QE.htm, accessed on March 14, 2017. 3 Ibid.

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In the current context, information and communication systems of public health policies are multiple. They exist in the form of groupings, multidisciplinary networks or bodies, at several levels of localization involving many actors likely to participate in the development of public health policies: institutions, medical and paramedical professions, professional representatives, scientists, elected representatives, training organizations, music therapists, health system users, etc. These devices appear in different ways, giving rise to working meetings and debates, which can be extended through the production of various documents. For example, at the heart of health care institutions, team meetings allow professionals to discuss the clinical evolution of a patient or to question practices to produce documents of varying length, serving the needs of the professional activity. These are, for example, care protocols or settlement projects, for internal or external information-communication, directed at other public health policy actors, such as the Agences Régionales de Santé [Regional Health Agencies] (ARS) or the Haute Autorité de Santé [High Health Authority] (HAS). Since the 1990s, with the development of information and communication technologies (ICTs) and the Internet, these practices also include digital devices: contributory platforms, computerized medical files, institutional websites, etc. [ROU 10]. Facilitating access to medical, professional and communication information, these devices have been involved for several years in an organizational change in care facilities aimed at the continuous improvement of practices and care quality [BOU 10]. They also help to communicate health information to users, thereby creating a form of trust in the public health system. Indeed, the question of trust is crucial in the health field. It immediately arises at the heart of the caring-nurtured relationship, questioning the forms of therapeutic alliance that may exist between a patient and a doctor and/or a therapist [COL 11, JAU 03]. In the inaugural situation of this type of relationship, where one is in a position of fragility and the other is “supposed to know”, trust takes a hybrid form between primordial, professional and social trust, blending elements of spontaneous belief with other, more constructed ones [TIR 97]. As a result, it spreads to all forms of health care and the public health system, thus contributing to the reduction of social complexity [LUH 06]. It is found in the discourse of patients using music therapy who find it difficult to situate this practice between its cultural,

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educational and therapeutic dimensions.4 However, while trust presupposes a suspension of uncertainty in relation to the actions of others in a given situation, in order to be able to establish itself, what about the trust of institutional actors toward this specific practice that is music therapy? How is music therapy presented and represented via digital devices and the Internet? Or, in the digital age, how do actors seize ICTs to produce informational content and communicate about this care practice? 7.3. Research field As part of our doctoral research focusing on representations of music therapy in information and communication devices of public health policies, regarding a field constructed between a music therapist’s professional experience and research practice in ICS [QUI 02], we have come to explore the Internet in order to observe content, in other words, discursive data related to this care practice. Indeed, this network of networks has an aspect that reveals a form of “publicized public space” [WOL 92], a “kind of terrain” on which many actors participate in a kind of “integrated online debate” where many discourses on various social issues are being spoken [BEN 09]. With the process of computerizing French institutions since the end of the 1990s and the “democratization” of ICTs, the Internet has allowed the visibility of many actors through a wide variety of institutional websites, associations or professionals. For example, the Haute Autorité de Santé (HAS) website provides health professionals with references to good practices that cite music therapy, among other non-drug therapies.5 Many organizations are deploying their training offers, benefiting from a visibility likely to reach an increasingly wide audience via the network. This is the case for the Paul-Valéry Montpellier 3 University6 or the UFR de médecine of the Nantes University which provide training in order to obtain a DU in music therapy.7 The Centre Hospitalier Universitaire (CHU) in Rouen also 4 Website of the patient association “Léthé musicale”, available at: http//www.lethemusicale. org/, accessed on March 25, 2017. 5 HAS, “La lettre d’information de la Haute Autorité de Santé”, no. 31, April-June 2012, available at: http//www.has-sante.fr/portail/upload/docs/application/pdf/2012-03/lettre_has_ 31_av_juin_bat.pdf, accessed on March 25, 2017. 6 Website of the Paul-Valéry Montpellier 3 University, musicotherapie.upv.univ-montp3.fr/, accessed on March 25, 2017. 7 Website of the Nantes University, available at: http//www.medecine.univ-nantes.fr/ servlet/search?l=0&RH=MEDECINE_FR1&beanKey=d6105dc3-734c-4ec9-aeec-a1be6b968476 &q=musicothérapie, accessed on March 25, 2017.

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devotes a page of its institutional website to music therapy.8 Its content highlights an interest in this care practice and refers, via hypertext links, to articles, some of which come from scientific publishing, dissertations, radio broadcasts, patient associations and training organizations regarding this specialty. Through this content, there is a real publicization of music therapy. In addition, the Assemblée Nationale website includes a series of 17 written questions to the government that testify to health issues that may involve music therapy. Of these, four, including the written question no. 17383 cited above, are concerned with the problem posed by the lack of this profession’s status, which puts the practice of qualified music therapists in jeopardy. Others refer to music therapy as a sort of stooge in different public sectors. In particular, we find ministerial responses in which music therapy is particularly suited to the care of the elderly or, in the prison system, of disabled prisoners. These observations question the paradoxes revealed by the political discourse on music therapy and the informational confidence on which ministerial responses are based. We will come back to this point later. The Internet has enabled us to provide content related to music therapy in order to develop a body of discursive data reflecting certain short-term features of information-communication around this care practice. It builds a given field of socio-technical mediation that can involve a representative panel of actors likely to participate in the development of public health policies, including institutional actors. The processes of this mediation mobilize different types of devices: parliamentary documents, media, websites, etc. In our approach, we were particularly interested in them by considering that “any medium of communication (film, text, book, multimedia ...) is a micro-device that can construct meaning. The media as a whole is a macro-device integrating a large number of techno-semiotic microdevices whose role is not to summarize, but to develop a sense of reality” [MEU 99, p. 89].

8 Website of the CHU de Rouen, available at: http//www.chu-rouen.fr/page/musicotherapie, accessed on March 25, 2017.

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7.4. Devices to observe The constructivist paradigm, according to which “man cannot have access to absolute reality, but to interpretations of this reality” [BON 07, p. 20], instills a conceptual framework of investigation that can summon the complexity paradigm to allow a pluralistic comprehensive approach to the objects of reality [MOR 90]. This approach does not exclude a principle of influence by which, to recognize, the reality “must be able to be cognitively constructed or intentionally reconstructed by an observer-modeler” according to a “standard of feasibility” that we place in relation to the concepts, theories and methods used in ICS [LEM 95]. In this sense, we mobilize the concept of a device, intimately linked to the analysis of information-communication processes or mediation and which leads to a rapprochement with the concept of in-between [PEE 99]. We extend this concept to that of informationcommunication devices, dedicated to informational, social and operational functions [COU 06, COU 01, PAG 12], and to which we attribute certain specificities in connection with their digital dimension that can affect sociosemio-technical content we observe [BRO 07, FLI 01, JOU 13]. In addition, many researchers are interested in this social anchoring of ICTs and the uses to which these new practices give rise to, both in the health and political sectors. Indeed, the role of ICTs opens up complex information-communication situations around public health issues that constitute a recurrent theme of the public space, now extended to the Internet: publicizing health, documentary networks for professionals and for the public, discussion forums, etc. This work makes the distinction between medical information-communication, which introduces notions of confidentiality and scientific field, and health, which can be the object of a wider public including public health system users [CLA 10, ROM 08]. Other research points to the intention of a normative process aimed at resolving certain tensions that may exist between the various actors in this sector and implicitly question the trust that can be placed in policy discourse [OLL 10, OLL 12, STA 12]. The importance of information and communication in public health policies, through the development of ICTs, encourages public action to disseminate certain values, which become dominant in our contemporary societies. Also, facing the phenomena of music therapy publicization that we observe in several digital contents, we can wonder according to which informational processes the discourses on this care practice are constructed, to which framework of enunciation they relate to, to which legitimacy they give rise to and what forms of trust they establish.

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7.5. Methodology As I mentioned above, I worked as a music therapist for over 10 years in a neuropsychiatric clinic. Therefore, I have an empirical knowledge of this specialty in a professional field where I met many actors of the health sector. Thus, in this research, I found myself in a complex position as a “practitioner-researcher” that could be questioned in ICS [DEL 07] and from which emerged forms of crossed implications that Jean-Louis Legrand [LEG 93] named in terms of implexity. At the heart of this implexity are the issues of commitment and ethics linked to the status of the apprentice-researcher, which forces him to be vigilant, almost permanently, with regard to the interpretative risks that could lead to too much subjectivity, especially in the implementation of a research device between a choice of corpus, a method of collection and analysis, and a methodology [ROY 07]. In any case, “the term “practitioner-researcher” does not only mean that the researcher is engaged in a professional field other than that of research. It means that the professional activity generates and guides the research activity, but also that the research activity revitalizes and reorientates the professional activity in a dialogical and recursive way” [DEL 07]. What’s more, in this process, he also evolves with regard to the actors of the scientific discipline to whom he is affiliated. Regarding a situation constructed between professional experience, the Internet and the disciplinary field, I have implemented an ethnographic methodology, or even an online auto-ethnographic study, pertaining to qualitative methods and consisting of studying contents from which discursive data emerged. Different categories of actors that I also indirectly observed were studied. This approach allowed non-intrusive access to materials that were enduring enough to be used in research [HAM 07]. However, it also had some limitations: the discourses emerging from the content entered online were of a different order than if they were collected through interviews in the presence of key players. However, while all the operations performed on networks and digital devices fell within the scope of distance, dematerialization and asynchronous relations, we can consider that this virtual/face-to-face opposition also means that the presence was displaced in the screens and flows of information and communication on the web [DUR 13, p. 95]. Thus, are the modalities of relationships and linking on the Internet so radically opposed to reality? Are they not rather displaced by the digital, according to different levels of interactivity that we can situate in the human-machine relations and the intermediate potentialities of digital

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devices? And, like Yves Winkin, let’s remind ourselves that “the ethnographic approach is above all an “art of seeing”” [WIN 17]. Thus, in our online observation process, we took into account these levels of interactivity through the semio-pragmatic approach that we also used, applying it to the context of the Internet. The semio-pragmatic approach has been described by several researchers in HSS and ICS [EVE 84, ODI 11, ODI 83]. According to the authors, it mobilizes theories that can come from linguistic semiology or the semiotics of communication, especially through Peirce’s work. He defined the categories of firstness, secondness and thirdness to allow us to understand, while situating them, the signification processes [EVE 06]. Whatever the case may be, these two approaches account for the operability of semiotic in a position of explicitation rather than a position of demonstration: “recognizing the signification in things is the same as setting the relation to things, their place in the world, in our world, our place and that of others through the signs that manifest themselves” [BER 15, pp. 12–13]. In our research, the appropriation of this approach led us to develop a flexible analysis grid, allowing us to understand the documents’ content by attributing what constituted our corpus, including their relations to the devices from which they were extracted [JOU 13]. We have defined criteria for observing the access conditions to this content, their referencing, their editorial logic, their enunciation framework, their materiality (textual, visual, audio), the interactional potentialities of the devices (digital documents, websites, contributive platforms) from which they are extracted, the technical constraints presented by these devices, etc. In my analysis, I also took into account my own constraints and my particular position as a researcher-practitioner, to try to better understand the informationcommunication processes at work, according to different levels of devices of which their combined analysis allowed for a better understanding of the trust between actors: micro (primary document or by attribution), meso (referring to an institution) and macro (by crossing the contents diffused by different categories of actors). 7.6. Trust apprehended through the digital document From the digitized document to the document developed with the digital tool, which can introduce new modalities and methods of expression, documentarizing deployed via the Internet allows me, thanks to easy access,

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to optimize the use of the document [SAL 07], at the risk of certain information-communication behaviors that can influence or even persuade the reader. In fact, taken in isolation, the digital document proposes a communication contract to the reader in which the latter can spontaneously rely on the information it contains, without necessarily evaluating this content according to criteria of relevance, reliability, credibility, and quality: “The notion of informational trust appears [then] as an important element of the informational behavior and documentary practices of the actors”. [MAU 12, pp. 74–76]. To illustrate this point, of the 17 written questions I found on the Assemblée Nationale website, let’s go back to the written question no. 17383, which I quoted above, a screenshot of which is shown in Figure 7.1.9 While this parliamentary document had already allowed us to note that the French Ministry of Health is able to identify music therapy and recognizes the reality of its practice, particularly in psychiatry and geriatrics, we return to this written question to take our analysis further. At the bottom of ministerial response text, we read that “university courses delivered in this field are under the sole responsibility of the university”. This indication led us to point out an uncertainty in political discourse which questions the trust concerning certain university training. It also questions the relations that may exist between the different ministries involved in these remarks. The ministerial text continued: “The technological and clinical evaluation of these practices remains to be undertaken. It is only on the basis of this work that regulatory provisions may be considered”. This textual content suggests here, as an obviousness, that university courses deliver degrees in music therapy without making room for clinical evaluation of the practices they teach, which is not necessarily the case.10 This observation led to a questioning of the informational behavior of political actors and the intention of their discourse: “the analysis of political discourses from the angle of what they presuppose (both linguistically and in the ordinary sense) is

9 Assemblée Nationale website, available at: http//questions.assemblee-nationale.fr/q13/ 13-17383QE.htm, accessed on May 6, 2017. 10 Indeed, university training of music therapists gives rise to internships, and there are many scientific articles, books and dissertations carrying out a critical analysis of the clinical practices of music therapy. Source: Documentation network of psychiatry professionals “ascodocpsy”, edited by Nathalie Berriau, available at: http//www.ascodocpsy.org/santepsy/ index.php?lvl=more_results&autolevel1=1, accessed on April 14, 2017.

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elsewhere, intuitively, one of the favored grounds of political criticism itself. The presupposition is frequently solicited to try to impose, indirectly, certain ideas or conceptions [...] Extracting the presuppositions of a discourse involved making thesis that its authors would like to appear as evidences removed from the discussion” [KRI 12, pp. 139–140]. The performative effect of this textual content is reinforced here by the formatting of the written question, which appears in a table on the Assemblée Nationale website and provides from the outset an impression of framing the question asked by the deputy. He questioned the ministry’s interest in keeping health professionals away from the health system and socio-professional inequalities. Moreover, the written question to the government is a prerogative granted to parliamentarians. It is a democratic tool, allowing elected officials to relay certain issues relating to a subject of collective interest that may emanate from civil society or local elected representatives. In short, the written question constitutes an information-communication device on its own, between public policy actors. This measure has the defining feature of allowing information to be diffused in a deferred framework. The formulation of a written question follows a strict procedure governed by Article 135 of the Standing Orders of the Assemblée Nationale. It must be brief and concise. At first, the text of the question is given to the President of the Assemblée Nationale who informs the government. This is then published in the Journal Officiel. The questioned Ministry has an obligation to respond within a legal deadline of one month. They may elude the question by stating in writing that it is of no public interest or ignoring it, in the hope that it will be “forgotten”. In case of a non-response within the given time period, it will be the responsibility of the question’s author to request a renewal.11 In our screenshot (see Figure 7.1), we observe a delay of more than three years between the date of publication in the Journal Officiel of the question and that of the answer. This delay reinforces a feeling of trust toward regional elected representatives but also uncertainty regarding social trust between public policy actors.

11 Assemblée Nationale website, available at: http//www.assemblee-nationale.fr/connaissance/ collection/4.asp#P270_45329, accessed on April 14, 2017.

Figure 7.1. A screenshot of the written question no. 17383. See the next page for the English translation. For a color version of the figure, see http://www.iste.co.uk/paganelli/confidence.zip

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Work, employment and health

Beneficiary Ministry

By Mr. Bascou Jacques (socialist, radical, citizen and others - Aude)

Mr. Jacques Bascou questions the Minister of Health, Youth and Sports on the place of music therapy in the care economy. Unlike other European countries, in France, music therapy seems to be poorly recognized among acts that bring well-being or better-being to patients and / or residents of health care facilities. The benefits of music therapy are nevertheless known in particular in psychiatry, geriatric medicine, neo-natality, and palliative care, and universities form to this practice. The music therapists would encounter especially great difficulties to do their job because of the insufficiency of the means of the establishments. The financing of music therapy sessions led by qualified professionals does not appear to be a priority in a context of budgetary tensions. He asked him if an incentive could be given to health care and medical-social institutions to make better use of the services of music therapists trained by universities.

Music therapy consists of using music as a medium of mediation as part of a care oriented towards the well-being of the person in her environment. This specific activity intervenes in support and accompaniment within the framework of a pluriprofessional care. In health care institutions, the use of this practice is a reality, especially in psychiatry or geriatrics. Moreover, this activity is not only carried out by health professionals who have completed additional training but also by professionals from other sectors such as those in the field of education (for example, early childhood educators, school teachers). University courses delivered in this field are placed under the sole responsibility of the university. The technological and clinical evaluation of these practices remains to be undertaken. Only on the basis of this work will regulatory provisions possibly be considered.

Analysis

Text of the question

Text of the answer

English translation of Figure 7.1

Health policies

music therapy, development

Evaluation header

Health

Section

Date of the attribution change : 11/14/2010

Answer published on the JO on the : 03/15/2011 page : 2544

Question published in the JO on the : 02/19/2008 page : 1366

Health, youth and sport

Interrogated Ministry

Question no.: 17383

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Since 2008, written questions have been formalized via a specialized Internet portal accessible to deputies. We can assume that this computer procedure takes turns with another one, a “paper” version completed via an administrative form. With the computerization of French institutions, written questions are now systematically archived on the Assemblée Nationale website, facilitating their consultation and thus offering a greater visibility of political action to the public. We observed that the written question materializes through different types of devices. It is started from an initial administrative document (paper or digital). It is registered by its publication in the Journal Officiel, which in addition to media function also takes document value by intention, bringing to light a piece of evidence, a trace of the question asked to the government and its answer. It is then archived on the Assemblée Nationale website, which makes it available to parliamentarians and the public via the parliamentary documents section. Its distribution and consultation are then ensured by the Internet and digital devices, which with their media potential are also valued by social digital devices. Thus, the materialization of the written question follows an information-communication process that unfolds between different types of socio-technical devices from a locally identified problem whose members are the spokespersons to its distribution on the Internet where it also leaves a trace. It then becomes likely to be consulted by different audiences, participating in the process of informational trust between public health policy actors and Internet audiences. 7.7. Trust apprehended via institutional sites Through our approach of the Assemblée Nationale website that concretizes a type of information-communication device, we have identified 17 parliamentary documents in which reference is made to music therapy. Among them, seven written questions addressed to the French Ministry of Justice by various deputies during the 14th legislature concerned the detention conditions of disabled persons. In five ministerial replies, we found the same textual content, the subject of an occurrence of the term music therapy according to the following semantic context: “The prison administration ensures that they [the disabled] can benefit from specific activities [...]. Adapted activities (occupational therapy, music therapy, etc.) are also proposed” (written questions no. 21492; 31291; 32137; 32911; 33791). Music therapy appears to be associated with occupational therapy, as a recognized activity that can be perfectly adapted to assisting prisoners

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with a disability. This observation demonstrates a professional trust placed in music therapists by the French Department of Justice. However, given the written question no. 17383, these five answers question the trust between the actors of the public policies, whose discourse reveals some paradoxes, in particular between the regulatory provisions which can be taken from one ministry to another. We also note here that music therapy is not a common practice in the penitentiary system. In fact, this adapted activity only concerns a small number of prisoners, while the number of persons with disabilities (all types of disability combined) is relatively high among the prison population [NOA 14]. Moreover, the literal repetition of the same textual content in the Ministry of Justice’s responses to these five questions makes us question the trust involved in the processes of producing government information. Indeed, this redundancy refers to a digital effect that seems to reduce these processes to practices of “copying and pasting” text from one response to another. Also, this type of process casts doubt on the information practices of the actors who produce these contents, at the intersection of which we capitalize on stereotyped behaviors that devalue the quality of the ministerial information. 7.8. Trust apprehended through digital devices As soon as they are connected, digital devices can also be used as comparative tools to navigate from one institution website to another to better understand the relevance of content, thus contributing to the information trust process. For example, we observed that online government information disseminated through responses to written questions is similar to that produced by other institutional sites, such as that of the Haute Autorité de Santé (HAS). This is particularly true for the reality of music therapy in psychiatry and geriatrics. Indeed, we found this information on various documents produced and distributed by the HAS (see appendix indexing our corpus). HAS is an “independent public authority (IPA) of a scientific nature, endowed with legal personality”12. Created by the law no. 2004–810 of August 13, 2004, on health insurance, it became a key factor in public health policies. It brings together a panel of experts appointed by the decree of the President of the Republic. These experts who are multidisciplinary 12 Law no. 2004–810 of August 13, 2004, on health insurance. Article 35.

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personalities (hospital practitioners, pharmacists and lawyers)13 are also politicized. If their scientific status can constitute an index of trust, it also helps to identify the influence of the nobility powers represented by professional orders on public health policies. A force is likely to raise some conflicts of interest with other less well-represented professional categories. The HAS carries out evaluation missions, promotion of good practices, improvement of care quality, but also of support, and even of sanction toward the least performing institutions or the most in difficulty. These are missions that it claims to carry out with an objective to consult with “all the actors of the health system”.14 Thus, this body declares itself a guarantor of altruistic trust, integrating a social dimension by which “individuals share norms and adopt a predictable behavior based on shared values” [SIM 07, p. 85]. A trust appears here instituted from the outset and proves to be the institution of a public authority in matters of health information and communication. But are these performative statements enough to build institutional trust? Indeed, since its creation, the HAS has produced many documents that it distributes on its website for professionals and users. These documents follow a strict editorial logic, which is reflected in their content. They are produced by working groups supervised by HAS members. For example, the reference standards of good practice make it possible to identify HAS project managers, medical specialists, generalists, health managers, nurses, psychologists, occupational therapists, etc.15 These health professionals can relay information on current practices in health care institutions, which may refer to music therapy. Their auctorial ethos then comes to validate, more or less implicitly, the place of music therapy in care measures: “Music therapy, aromatherapy, multisensory stimulation [...] could improve certain aspects of behavior”.16 Informing on the reality of this care practice without always specifying what it consists of, HAS experts declare: “the organization of the assumption of responsibility is the

13 HAS website, available at: http//www.has-sante.fr/portail/jcms/c_434776/fr/compositiondu-college-de-la-haute-autorite-de-sante, accessed on April 18, 2017. 14 HAS, “Principes fondateurs, rôle, missions et organisation”, p. 4, March 2005, available at: http//www.has-sante.fr/portail/upload/docs/application/pdf/DP_HAS_janvier05.pdf. 15 HAS, “Recommandation de bonne pratique, Maladie d’Alzheimer et maladies apparentées : diagnostic et prise en charge”, p. 47, December 2011, https://www.has-sante.fr/portail/ upload/docs/application/pdf/2011-12/recommandation_maladie_d_alzheimer_et_maladies_ apparentees_diagnostic_et_prsie_en_charge.pdf. 16 HAS, “Recommandation de bonne pratique, Maladie d’Alzheimer et maladies apparentées: diagnostic et prise en charge”, p. 20, December 2011.

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responsibility of the establishment’s doctor”.17 These institutional and politicized actors who put forward the power of the medical order then become the “pivotal” actors of a possible mistrust towards the government that is empowered to make regulatory provisions. They exercise tacit authority over the actors of public health policies, having the power to legitimize the practice of music therapy in hospital structures.

Figure 7.2. A screenshot of the organization chart of the non-drug 18 management of people suffering from Alzheimer’s disease . For a color version of the figure, see http://www.iste.co.uk/paganelli/confidence.zip

In the Lettre d’information de la Haute autorité de santé, no. 31, April– June 2012, which gave rise to several types of publication (paper and digital), we found the information contained in the recommendation of good practice, which we cited above. This eight-page letter is aimed at healthcare professionals and users of the health system. It offers mixed content, typical of the documents that can be realized with the digital tool and include a logo, titled headings, textual content, visuals, boxes, photos, comics, illustrated diagrams and hypertext links exclusively directed toward the HAS website. 17 HAS, “Recommandation de bonne pratique, Maladie d’Alzheimer et maladies apparentées : diagnostic et prise en charge”, p. 24, December 2011. 18 HAS, “La Lettre d’information de la Haute autorité de santé”, no. 31, p. 6, April–June 2012.

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Without claiming here an exhaustive analysis of the content of this letter, let’s stop at page 6 of this document, which offers a diagram of the organization of caring for people living with Alzheimer’s disease, concerning non-drug therapies. In the center, in the box with a green background, the text specifies that non-drug therapies are an important element of care. This text box, linked to the other boxes, refers, at the bottom of the page, to the word music therapy that we circled in red. The content of the central area facilitates our understanding of music therapy according to three points, according to a series of performative statements by which it brings about a higher standard of well-being to the patient by allowing him to maintain a social link and to maintain his cognitive functions and his autonomy. The text states: “They [non-drug therapies] are implemented by trained professionals and are part of a care project [...] of an establishment’s ‘project”. The occurrence of the word music therapy on this diagram is an implicit indication of the trust granted to music therapists, considered to be trained professionals, which we find in our written question no. 17383. The text in the box where this word is located specifies that this is one of the behavioral interventions among aromatherapy and light therapy. The association of music therapy with these other practices poses an ambiguity regarding the expression trained professionals that then questions the relevance of the information contained in this diagram. In fact, there are different types of training in these practices, in the form of a module or an awareness-raising course aimed at audiences who can be very diverse and which do not necessarily lead to a diploma equivalent in duration and content to the DU of a music therapist. We observe then that there is a certain vagueness around all these non-drug therapies, including among a panel of experts such as those of the HAS. This ambiguity creates an additional uncertainty that questions the informational behavior of the experts with regard to this therapy category; especially as on page 2 of this same newsletter, it is mentioned that the contribution of the HAS to the Alzheimer’s plan is part of a context that became controversial in 2011 around conflicts of interest within the pharmaceutical industry: “Because of suspicion about the declarations of interest of some experts, the HAS had to withdraw its recommendation of good practice on diagnosis and care, in order to protect its image as an independent institution”. This is a clarification which displaces the initial interest of the actors in favor of non-drug therapies, including music therapy, and makes it possible to put in a perspective expert discourse and the institutional trust which is revealed here according to a principle of opportunism.

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7.9. Conclusion By means of music therapy, we observe the role of information activity in the process of forming institutional trust that contributes to the perception of social trust between actors, according to different devices. Technically, digital devices facilitate access to a diversified information that could allow actors to develop music therapy content, according to a process of trust which is also epistemic. However, we have observed that HAS scientific experts and the institutional actors who contribute to the development of public health policies do not necessarily refer to the most reliable documents concerning this care practice. Indeed, our reading has allowed us to identify a “perverse” effect of digital technology that we have highlighted in relation to certain “copying and pasting” practices and a lack of significant documentary resources regarding the actors’ behavior. But does digital technology make these practices more visible or does it incite them? Moreover, through these behaviors, it would seem that the actors of public health policies are ultimately limited by logics of power that are not rethought in relation to the potential of ICTs and the wealth of resources to which they give access. The information thus instituted, according to a system of authorship mediated via digital devices, then reveals a normative intentionality, instituting the marginalization of music therapy. Paradoxically, it also highlights the process of nascent socio-professional trust between music therapists and the HAS, according to the model of institutional trust that is rooted in the field of clinical practice and has repercussions on HAS actors who, themselves, influence public health policies. The information-communication devices, according to the different levels that we have described including digital ones, then offer potentialities to allow for the initiation of a strategic trust development, more in line with the interests of all health system actors, that is to say, including graduate music therapists [LAU 12]. In this process, the evaluation of the relevance and quality of the information as well as the modalities of its mediation appear to us to have a fundamental role to take in order to situate political action in relation to the axis of an info-communication trust instituting the legitimacy and authority of public health policy actors.

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7.10. Annex Below, we list, according to different categories, the digital documents used in the writing of this chapter and which constitute a part of our research corpus. 7.10.1. Parliamentary documents – Question écrite no. 24092 du 01/09/2003, 12e législature. – Question écrite no. 77607 du 08/11/2005, 12e législature. – Question écrite no. 98246 du 27/06/2006, 12e législature. – Question écrite no. 17383 du 19/02/2008, 13e législature. – Question écrite no. 79849 du 01/06/2010, 13e législature. – Question écrite no. 96719 du 21/12/2010, 13e législature. – Question écrite no. 21492 du 19/03/2013, 14e législature. – Question écrite no. 31291 du 02/07/2013, 14e législature. – Question écrite no. 32137 du 09/07/2013, 14e législature. – Question écrite no. 32911 du 16/07/2013, 14e législature. – Question écrite no. 33791 du 23/07/2013, 14e législature. – Question écrite no. 50853 du 25/02/2014, 14e législature. – Question écrite no. 61482 du 22/07/2014, 14e législature. 7.10.2. Documents distributed by the HAS – HAS, La lettre d’information de la Haute autorité de santé, no. 31, April– June 2012. Accessible in pdf via the URL link: https://www.has-sante.fr/ portail/upload/docs/application/pdf/2012-03/lettre_has_31_av_juin_bat.pdf. – HAS, “Maladie d’Alzheimer et maladies apparentées: diagnostic et prise en charge, Recommandations”, December 2011. Accessible in pdf via the URL link: https://www.has-sante.fr/portail/upload/docs/application/ pdf/2011-12/recommandation_maladie_d_alzheimer_et_maladies_apparentees_ diagnostic_et_prsie_en_charge.pdf.

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7.10.3. Attribution documents created using screenshots from institutional website pages via the following links – Website of the Paul-Valéry University, URL: http://musicotherapie.upv. univ-montp3.fr/page-d-exemple/. – Website of the National Commission for Professional Certification, URL: http://www.rncp. cncp. gouv.fr/grand-public/resultat. – Website of the Ministry of Solidarity and Health, URL: http://www. metiers-fonctionpubliquehospitaliere.sante.gouv.fr/spip.php?page=recherché &recherche=musicothérapeute&x=0&y=0. – Website of the Nantes University, URL: http://www.medecine.univnantes.fr/servlet/search?l=0&RH=MEDECINE_FR1&beanKey=d6105dc3-73 4c-4ec9-aeec-a1be6b968476&q=musicothérapie. – Website of the CHU de Rouen, URL: http://www.chu-rouen.fr/page/ musicotherapie. – Website of the Assemblée Nationale, URL: http://www2.assembleenationale.fr/recherche/questions. 7.11. References [BEN 09] BENRAHHAL-SERGHINI Z., MATUSZAK C., “Lire ou relire Habermas : lectures croisées du modèle de l’espace public habermassien”, Études de Communication, Langages, Information, Médiations, no. 32, pp. 33–49, 2009. [BER 15] BERTHELOT-GUIET K., BOUTAUD J.J. (eds), Sémiotique mode d’emploi, Le Bord de l’eau, Lormont, 2015. [BON 07] BONNEVILLE L., GROSJEAN S., LAGACÉ M., Introduction aux méthodes de recherche en communication, Éditions de la Chenelière, Montreal, 2007. [BOU 10] BOURRET C., ANDONIVA Y., “Les réseaux de santé en France ou comment créer du lien par la maîtrise de l’information et l’amélioration des processus communicationnels entre les acteurs”, in ROUTIER C., D’ARRIPE A. (eds), Communication & Santé : Enjeux Contemporains, Presses Universitaires du Septentrion, Villeneuve-d’Ascq, 2010. [BRO 07] BROUDOUX È., “Construction de l’autorité informationnelle sur le web”, in SKARE R., LUND N.W., VARHEIM A. (eds), A Document (Re)turn: Contributions From a Research Field in Transition, Peter Lang, Frankfort-surle-Main, 2007.

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[CLA 10] CLAVIER V., MANES-GALLO M.C., MOUNIER E. et al., “Dynamiques interactionnelles et rapports à l’information dans les forums de discussion médicale”, in MILLERAND F., PROULX S., RUEFF J. (eds), Le Web relationnel : mutation de la communication ?, Presses de l’Université du Québec, Quebec, 2010. [COL 11] COLLOT E., L’alliance thérapeutique - Fondements et mise en œuvre, Dunod, Paris, 2011. [COU 06] COURBIÈRES C., RÉGIMBEAU G., “Entrées pour le document : praxis, matières et formes sociales”, Sciences de la société, no. 68, pp. 3–9, May 2006. [COU 01] COUZINET V., RÉGIMBEAU G., COURBIÈRES C., “Sur le document : notion, travaux et propositions”, in COUZINET V. (ed.), Jean Meyriat, Théoricien et Praticien de L’information-Documentation, ADBS, Paris, 2001. [DEL 07] DE LAVERGNE C., “La posture du praticien-chercheur : un analyseur de l’évolution de la recherche qualitative”, Recherches Qualitatives, special edition no. 3: Actes du colloque Bilan et prospectives de la recherche qualitative, pp. 28–43, 2007. [DUR 13] DURAMPART M., “Le rôle des TIC en tension ou en conciliation dans un espace démocratique et social”, in NAJAR S. (ed.), Les réseaux sociaux sur internet à l’heure des transitions démocratiques, IRMC, Karthala, 2013. [EVE 84] EVERAERT-DESMEDT N., La Communication Publicitaire : Étude SémioPragmatique, Cabay, Louvain-La-Neuve, 1984. [EVE 06] EVERAERT-DESMEDT N., Interpréter l’art contemporain. La sémiotique peircienne appliquée aux œuvres de Magritte, Klein, Duras, Wenders, Chávez, Parant et Corillon, De Boeck, Brussels, 2006. [FLI 01] FLICHY P., “La place de l’imaginaire dans l’action technique. Le cas de l’internet”, Réseaux, vol. 5, no. 109, pp. 52–73, 2001. [HAM 07] HAMMERSLEY M., ATKINSON P, Ethnography: Principles in Practice, Taylor & Francis, New York, 2007. [JAU 03] JAUNAIT A., “Comment peut-on être paternaliste ? Confiance et consentement dans la relation médecin-patient”, Raisons Politiques, vol. 3, no. 11, pp. 59–79, 2003. [JOU 13] JOUËT J., LE CAROFF C., “L’observation ethnographie en ligne”, in BARATS C. (ed.), Manuel D’analyse du Web, Armand Colin, Paris, 2013. [KRI 12] KRIEG-PLANQUE A., Analyser les discours institutionnels, Armand Colin, Paris, 2012.

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[LAU 12] LAURENT É., Économie de la confiance, La Découverte, Paris, 2012. [LEG 93] LEGRAND J.-L., “L’implexité : implication et complexité”, Cahiers de la section des sciences de l’éducation de l’université de Genève, no. 72, pp. 251– 268, 1993. [LEM 95] LE MOIGNE J.-L., Les épistémologies constructivistes, Presses universitaires de France, Paris, 1995. [LUH 06] LUHMANN N., La confiance : un mécanisme de réduction de la complexité sociale, Economica, Paris, 2006. [MAU 12] MAUREL D., CHEBBI A., “La perception de la confiance informationnelle. Impacts sur les comportements informationnels et les pratiques documentaires en contexte organisationnel”, Communication et Organisation, no. 42, pp. 73–90, 2012. [MEU 99] MEUNIER J.-P., “Dispositif et théories de la communication : deux concepts en rapport de codétermination”, Hermès, La Revue, no. 25, pp. 83–91, 1999. [MOR 90] MORIN E., Introduction à la pensée complexe, ESF Éditeur, Paris, 1990. [NOA 14] NOALI L., “La peine de prison à l’usure?”, Champ pénal, vol. 11, available at: http://journals.openedition.org/champpenal/8987, 2014. [ODI 83] ODIN R., “Pour une sémio-pragmatique du cinéma”, Iris, vol. 1, no. 1, 1983. [ODI 11] ODIN R., Les espaces de communication : introduction à la sémiopragmatique, Presses universitaires de Grenoble, Grenoble, 2011. [OLL 10] OLLIVIER-YANIV C., “Discours politiques, propagande, communication, manipulation”, Mots. Les langages du Politique, no. 94, pp. 31–37, 2010. [OLL 12] OLLIVIER-YANIV C., “TIC et communication de santé publique : une normalisation ambivalente”, Communiquer dans un monde de normes. L’information et la communication dans les enjeux contemporains de la “mondialisation”, Lille, France, 7–9 March 2012. [PAG 12] PAGANELLI C., Une approche info-communicationnelle des activités informationnelles en contexte de travail : acteurs, pratiques et logiques sociales, Thesis, Grenoble University, 2012. [PEE 99] PEETERS H., CHARLIER P., “Introduction. Contribution à une théorie du dispositif”, Hermès, La Revue, no. 25, pp. 15–23, 1999. [QUI 02] QUINTON P., “Le sens du terrain”, Études de communication, no. 25, pp. 41–50, 2002.

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[ROM 08] ROMEYER H., “TIC et santé : entre information médicale et information de santé”, TIC & société, vol. 2, no. 1, pp. 26–44, 2008. [ROU 10] ROUTIER C., D’ARRIPE A. (eds), Communication & santé : enjeux Contemporains, Presses universitaires du Septentrion, Villeneuve-d’Ascq, 2010. [ROY 07] ROYER C., “Peut-on fixer une typologie des méthodes qualitatives ?”, Recherches Qualitatives, Hors-Série no. 5: Actes du colloque Recherche Qualitative: Les questions de l’heure, pp. 82–98, 2007. [SAL 07] SALAÜN J.M., “La redocumentarisation, un défi pour les sciences de l’information”, Études de Communication, no. 30, pp. 13–23, 2007. [SIM 07] SIMON É., “La confiance dans tous ses états”, Revue Française de Gestion, no. 175, pp. 83–94, 2007. [STA 12] STAII A., “De la normalisation et des TIC : Résistances, persistances et reconfigurations sociétales autour des questions de santé”, in ZLITNI S., LIÉNARD F. (eds), La communication électronique dans la “société de l’information” : Quels usages, quelles pratiques ?, Klog, Saint-Aignant, 2012. [TIR 97] TIRAN A., “Confiance sociale, confiance primordiale en partant de Georg Simmel”, in BERNOUX P., SERVET J.-M. (eds), La construction sociale de la confiance, Association d’économie financière, Paris, 1997. [WIN 17] WINKIN Y., “Communication”, in Encyclopædia Universalis, available at: http://www.universalis.fr/encyclopedie/communication, 2017. [WOL 92] WOLTON D., “Les contradictions de l’espace public médiatisé”, Hermès, La Revue, vol. 1, no. 10, pp. 95–114, 1992.

8 Hospital Trust and Legitimacy: Internal Medicine in the French Health Care System

8.1. Introduction The hospital organization is made up of spaces for the exchange of information, goods and services, particularly between caregivers (nurses in care units) and doctors. In this environment, the complexity of the overall management of the patient’s needs manifests itself in terms of profitability requirements [BOU 13, GEO 12, HOL 16, RIV 12]. This global care requires effective cooperation between the actors involved in the care processes [MAY 13] and the legitimization of an interface-actor who would assume the role of a “transversal integrator” in order to promote the coordination of these processes in a context of legitimacy and trust: “the hospital today needs to refocus on controling where trust is a strong and shared value. Distrust is born of doubt and fear. Trust is created and developed in the security that is born of a better mutual knowledge” [MIR 14, p. 37]. Trust, security and mutual understanding are three pillars that reinforce the legitimacy of the cross-cutting integrator. The purpose of this chapter is to examine the role and place of this key player, the transversal integrator, at the meeting point of hospital services, with the continued questioning between “differentiated worlds” and

Chapter written by Paméla BAILLETTE and Michel MANNARINI. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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“integrated processes”,1 in a context of legitimacy and trust within the health care system. More specifically, this chapter raises the question of the role that internal medicine can play in this area. This research raises both theoretical and managerial questions. In practical terms, it is a question of understanding the importance of the transversal integrator’s contribution, a bearer of trust and legitimacy, for the coordination and continuity of the care processes. From a theoretical point of view, there is a lack of work concerning this interface-actor in a hospital environment, especially concerning internal medicine. We, therefore, asked the following research questions: what is the role and place of this key player, the transversal integrator? More specifically, why and how can internal medicine, as a cross-cutting discipline, play a role in this? To answer this, a theoretical approach is proposed to further the different concepts, in connection with transversal integration (a term that we define further) in the health care system. The first section presents the interface-actor in his role as a transversal integrator. The second section focuses on internal medicine that could play a part of this role vis-à-vis patients with complex pathologies. 8.2. The interface-actor as a transversal integrator 8.2.1. Presentation of the interface-actor In organizational theory, Lawrence and Lorsch [LAW 73] argued that the greater the differentiation of an organization’s units in terms of objectives, structures, and interpersonal orientations, the greater the need for these units’ integration is significant. Therefore, according to Glouberman and Mintzberg [GLO 01a, GLO 01b], the natural forces of collaboration must be exploited in order to achieve a certain integration level proportionate to the differentiation level. Hence the interest of a repeated collaboration between hospital actors within an association that is governed by rules and a certain form of legitimacy [DIM 00, DIM 09, SCO 00, SCO 15].

1 See the pioneering work on the differentiation and integration of P.R. Lawrence and J.W. Lorsch, [LAW 67]: “Differentiation and integration in complex organizations”.

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Adequate integration at the hospital’s differentiation level, however, must be managed to meet integrated service delivery requirements in the health care system. The World Health Organization defines integrated and people-centered health services as “Integrated health services encompasses the management and delivery of quality and safe health services so that people receive a continuum of health promotion, disease prevention, diagnosis, treatment, disease-management, rehabilitation and palliative care services, through the different levels and sites of care within the health system, and according to their needs throughout the life course2”. This provision of integrated services in the health care system is now progressing more and more through investments geared toward the integration of hospital information systems and the computerization of care records [BEJ 15, EXP 17, OLO 15]. The actor studied here is the interface-actor or the transversal integrator responsible for the coordination and continuity of care processes, aiming for a more efficient and integrated hospital organization. The interface-actor here refers to the interface concept [LÉV 90]. The interface concept refers to the translation of operations and linking of heterogeneous media. Tarondeau and Wright [TAR 95] presented transversal organization as its recomposition by flow and by process rather than by function. This reorganization involves a cross-cutting integration of the organization’s processes and activities, the main objective of which is a greater control of flows and processes, in other words, of the entire chain of activities. Therefore, transversal integration is defined here as “the consideration of all actors and entities involved in the structure and functioning of the organization, so as to recompose this organization by flow and by process to allow for their better control”. Transverse integration implies a succession of interactions that fit into a bundle of environmental, technical, financial and human constraints. This makes the process of transversal integration complex and requires the use of a transversal integrator. The transversal integrator must be careful within a complex system, the attention of the actors being, as Simon [SIM 72] reminded us, a particularly rare resource in the organization. To do this, the transversal integrator is not a unilateral decision maker. He encourages and participates in collegial decision and control. Indeed, as indicated by Montalan and Vincent 2 World Health Organization, Health Systems, Integrated Service Delivery, available at: http//www.who.int/healthsystems/topics/delivery/fr/, accessed on October 2, 2017.

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[MON 01], medical team activity is multidisciplinary and therefore requires collective control. This implies that the transversal integrator has a uniform and universal translator role. 8.2.2. Interface-actor missions Having no direct authority over the managers or the staff of the different services, the transversal integrator can be confronted with a problem of legitimacy within the framework of their global mission. Taken individually, these services each have their own standards, their own cultures and their own legitimacy. Standards are constructed and observable through processes and procedures. They are similar to care, diagnosis and medical intervention, as well as control and reporting. The culture is identifiable and propagated through the business practices and the performances of each service. As a result, the individual legitimacy of services is not balanced within the health care system; nevertheless, it is acquired through the skills implemented and the performances achieved by the services individually. These three pillars – the norm, culture and legitimacy – are all the more distinct because the boundaries between services are distinct. The transversal integrator is therefore faced with a system characterized by these three pillars. This system is comparable to a multi-institutional system in which the imbalance of legitimacy is due to a balance of power anchored in the definition of organized and environmentally determined performances. The transversal integrator must therefore participate in the structuring of a larger set of services. It is through this institutionalization effort by the hospital that he can locate a necessary legitimacy. This legitimacy must be based on a cognitive culture, a normativity through the definition of objectives, processes and control. It requires recognition by the services and the system’s environment and also the transversal integrator’s role as a translator and a coordinator. The cross-cutting integrator must work within the framework of an institutionalization of services based on Scott’s culturalcognitive pillar [SCO 00]. This involves building a “trust basis”, based on a common understanding, the “basis of the order” on a constitutive schema, a “mechanism” primarily mimetic although normative, “indicators” related to

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the belief and the logic of shared action, and a “basis of legitimacy” recognizable by all and culturally accepted.3 Figure 8.1 shows the role played by the transversal integrator in the integrated care process.

Figure 8.1. The transversal integrator in the integrated care process. For a color version of the figure, see http://www.iste.co.uk/paganelli/confidence.zip

By linking an agreement of objectives and means with the collaboration between the actors, coordination becomes essential in a potential contractualization between caregivers and doctors. According to the distinction made by Favereau [FAV 89], following the example of the economic system, the coherent reorganization of the hospital organization

3 W.R. Scott’s analysis was largely taken on by R. Lounnas, research professional, attached to the Walter J.Somers Chair in International Strategic Management, HEC Montreal, [LOU 04].

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thus requires the mobilization of three “coordination” modes of health system actors: constraint, agreement (trust) and convention: – the “constraint” feature sets the rules of the game and makes it possible to arbitrate territorial differentiations; – the “agreement” (trust) feature serves as a basis for the negotiation and integration of services; – the “convention” feature makes it possible for the actors to deliberate and adhere to the goal of improving performance [GAD 99]. The existence and the durability of the system imply an accepted or imposed mutual understanding, which is a relationship medium, while ensuring group identity and organization cohesion. Moreover, in an organizational system such as the hospital and its services, the role of the transversal integrator cannot be limited to the time of the project, as it happens in most continuous improvement projects. This is a definitive role of transversal processes, areas of trust and exchanges. The characterization of transversality and processes is then a lever solicited and driven by the transversal integrator through a dynamic of consensus and conventions. He uses them and adapts them internally, and between services, thanks to a translation of the objectives and performances that he will be able to control in view of an overall performance. Organizational theory does not require, in itself, the introduction of a transversal integrator. Nevertheless, in a hospital organization, this role must be endorsed in order to ensure efficiency and legitimacy throughout the control operations where critical decision and trust factors reside. The missions allocated to the transversal integrator are rich and complex. They go well beyond the scope of operational activities and are part of a strategic approach involving all the players involved in the organization. Moreover, it is conceivable to consider that the transversal actor can be a group of people with trust and legitimacy rather than a single individual in order to be able to cover all the missions assigned to him at the interface of different hospital services.

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In this perspective, and in order to concretely visualize the work of the transversal integrator, our research is now focused on internal medicine, which is located at the interface of various services. Its activities obviously do not cover all the tasks allocated to the transversal integrator, but specifically concern the coordination and integration of patient care when it comes to complex cases. 8.3. Internal medicine at the interface of hospital services We first present the foundations of internal medicine and the role played in particular by the internist. Then, we study its legibility and notoriety. Finally, we highlight its current evolutions. 8.3.1. Internal medicine and the role of the internist As Professor Pierre Godeau,4 a specialist in internal medicine and a member of the French Academy of Medicine, recalled, “internal medicine really did not take off in France until after the Second World War. Until then, medicine was “one and indivisible” [...] whereas it [internal medicine] was already well known in the English-speaking countries since the beginning of the century”. In this context, while medicine was likely to crumble into multiple sub-specialties, internal medicine developed following the awareness of the need to maintain a close link between the various disciplines. Indeed, the patient is not only the victim of more or less limited pathologies, he must also be entirely supported, which is the primary goal of internal medicine. In France, internal medicine as a specialty officially came about in 1970, thanks to the Ordre des Médecins [Order of Physicians] creating the internal medicine qualification. The creation of the term “internal medicine”, intended on the one hand to adhere to an international harmonization, and on the other hand to distinguish this exercise from that of general medicine, dictated to internists from all walks of life, as everywhere in Europe and in the world need to come together, to make people aware and respect their specific features and to unite their skills in providing quality medical care, 4 Interview with Pr. Pierre Godeau, a specialist in internal medicine and a member of the French National Academy of Medicine, April 1, 2014, “L’information santé au quotidien” available at: http//destinationsante.com/linterniste-le-decathlonien-de-la-medecine.html, accessed on October 2, 2017.

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training and research.5 Hence, the creation of the Société nationale française de médecine interne [French National Society of Internal Medicine] (SNFMI) whose mission is to study all issues related to internal medicine, to promote its dissemination to doctors and future doctors and to ensure the representation at national and international levels (Article 2 of the Statutes). It has the following means of action (Article 5): – the organization of congresses, conferences or any other scientific meeting; – the publication of a newsletter; – the institution of study or price missions. Thus, the Fédération hospitalière de France [Hospital Federation of France] (FHF) defines internal medicine as the “part of medicine that studies rather the diseases affecting different organs (systemic diseases) or the defenses of the body (immune diseases). In the past, internal medicine was opposed to surgery and thus included all other medical specific features. Today, internal medicine [...] provides comprehensive care for patients when the disease is not concentrated to a single organ”.6 The quote “Médecine interne, maladies multi-organiques de l’adulte”7 appears, for example, at the hospital CHU de Montpellier.8 The White Book of Internal Medicine in France proposes the following general definition: “Internal medicine is a high-level specialty aiming at the global management of patients in adulthood practicing predominantly in a public or private hospital setting” [DUP 04, p. 20]. Consequently, Boinet and Pierru [BOI 10] attempted to evidence a new role for internal medicine, which they considered to be the most appropriate discipline to promote a more balanced concept – between global care requirements and necessary specialization – of medical progress.

5 Website of the Société nationale française de médecine interne, available at: http//www. snfmi.org/content/historique, accessed on October 2, 2017. 6 Medical specialties: “Médecine interne”, available at: http//www.hopital.fr/Le-dicomedical/Les-specialites-medicales/Medecine-interne, accessed on October 2, 2017. 7 Internal Medicine, multi-organic diseases of the adult. 8 Website of the CHU of Montpellier, available at: http//www.chu-montpellier.fr/fr/a-proposdu-chru/offre-de-soins/departement/detail/Mdecine-Interne/?no_cache=1, accessed on October 2, 2017.

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The internal medicine medical specialist is called an “internist doctor” or an “internist”. He deals with adult patients and is predominantly found in a hospital setting. He is involved in the management of rare diseases (dysimmune diseases, systemic diseases, orphan diseases and genetic diseases diagnosed during adulthood). He is also and above all concerned by patients who have several pathologies. He plays an important role for patients after they have gone to the emergency room. His field of action is vast, and his role is primarily that of a “diagnostic specialist”. He is a consultant who, once a diagnosis is made, is likely to refer the patient to the most appropriate specialist. The White Book of Internal Medicine in France highlights the essential nature of the internist’s overall care for the patient. Thus, “the internist must be able to restore the person as a whole, that is to say, to take into account the possible iatrogenic consequences of this or that vascular, neurological, anti-inflammatory, corticosteroid, immunosuppressive therapy, to opt for different functions and not to unbalance the therapy of one to the detriment of the other” [DUP 04, p. 27]. Therefore, the SNFMI explains the richness and complexity of the role that the internist must assume: “the internist must be able to maintain in equilibrium many functions, often contradictory in appearance: he must know how to take care of both the patients presenting so-called routine pathologies but requiring hospitalization either because of their situation, or their entanglement, as well as those with rare diseases or complex diagnoses, that he is trained to solve thanks to his training, his knowledge, his analytical mind and his ability to use advanced biotechnology; he practices a “general”, global, holistic and thorough medicine for patients with multiple pathologies while leaving specialists to treat medical problems of high specificity; he must also feel responsible for the health costs, while finally investing in teaching and clinical research”.9 With regard to the integrated care process, the internist must play a key interface role for the overall management of the patient, in conjunction with other hospital actors, but also with practitioners outside the hospital (city) – the referring physician of the patient, diabetologist, cardiologist, etc. – to whom he transmits his diagnosis and recommendations for each patient.

9 Société nationale française de médecine interne, available at: http//www.snfmi.org/content/ quest-ce-que-la-medecine-interne, accessed on October 2, 2017.

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Here, we rediscover the importance of “attention” – involving that of the internist – which is designated by Simon [SIM 72] as “a rare resource in the organization, given the current overabundance of information”. By also taking into account the phenomenon of “limited rationality” as outlined by Simon [SIM 82, SIM 83], this information must be managed: “the problem of organizations, today, is maintaining the person’s attention so that they do not get lost in trivial information [...]. We have to rethink our organizations in terms of attention management, since human attention is a much rarer resource than information”, said Simon, quoted by Demailly [DEM 86, p. 560]. The high level of attention required for the internist must be apparent to the patient in order to apprehend and consider possible solutions to the complexity of his case. Also, with reference to the interface concept put forward by Lévy [LÉV 90], it is a question of carrying out operations of translation, of linking heterogeneous media. The management of complexity is thus expressed at different levels for the internist, both medical, human and organizational, within a limited time frame. The literature also specifically emphasizes the complexity of the dialectic integration/ differentiation of the units of an organization [LAW 67, LAW 73], as is particularly the case in hospitals. 8.3.2. Readability and notoriety of internal medicine Hospitals more or less highlight the role and interest in internal medicine. For example, at the hospital CHU de Caen,10 it is written on the internal medicine home page: “The specificity of the internal medicine service concerns systemic diseases, that is to say, those that can affect several organs simultaneously. These diseases can be inflammatory, often autoimmune [...] These are most often chronic diseases requiring regular monitoring, in collaboration with the treating physician and the organ specialist(s) [...]. The service synthesizes these often complex cases and coordinates care”. In addition, for the CHU de Nantes11: “The department of internal medicine carries out on the one hand general hospital medical activity and on the other hand displays expertise in the diagnosis and management of rare and vascular diseases.” Another example, with respect to CH St. Joseph St. Luc

10 Website of the CHU de Caen, available at: http//www.chu-caen.fr/medecineinterne. html, accessed on October 2, 2017. 11 Website of the CHU de Nantes, available at: http//www.chu-nantes.fr/medecine-interne7495.kjsp?RF=1208432997986, accessed on October 2, 2017.

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of Lyon12: “Within the department of internal medicine, infectious disease specialists intervene directly to improve the overall and multidisciplinary management of hospitalized patients”. However, it is clear that the explanation of what internal medicine is and its interest in the health care system is not a common and standardized practice on CH and CHU websites. They often simply add the simple quote “internal medicine” accompanied by practical information (location, department manager, etc.), the list of areas concerned (autoimmune diseases, infectious diseases, etc.) and the medical team. Regarding its legibility and notoriety, there is still little knowledge or understanding of internal medicine in France. The recognition of this specialty was also late, as indicated by De la Blanchardière and Le Dinh [BLA 94]: a definition of the specialty in 1966, a qualification criteria in 1970, a national union in 1975, a scholarly society in 1979, a diploma of specialized studies in 1974; in comparison with English-speaking countries, especially Germany, where internal medicine was born in 1882. The SNFMI also underlines it: “internal medicine, a denomination dear to English speakers and known about in Germany since the end of the 19th century, remains rather unknown and misunderstood in France despite its dynamism and its essential place in the health system, especially in hospitals”.13 The SNFMI then proposes a semantic explanation by considering that the term “internal medicine” is ambiguous in France, unlike English-speaking countries. Also, to clarify: “We, internists, are often considered by our specialist colleagues as “super” “generalist” doctors, most often working in hospitals. In fact, as true specialists, we are representatives of general medicine and specialized medicine concerning organs”. Here, we find the difference, even the opposition, perceived both in the hospital and in public opinion – especially in France – between the general practitioner and the specialist. The internist is thus often considered as a general practitioner since he is interested in all patient pathologies while he is also a diagnostic specialist who sends the patient to the most appropriate

12 Website of the CHU St Joseph St Luc de Lyon, available at: http//www.ch-stjoseph-stluclyon.fr/service/27.M%C3%A9decine%20interne, accessed on October 2, 2017. 13 Website of the Société nationale française de médecine interne, available at: http// www.snfmi.org/content/quest-ce-que-la-medecine-interne, accessed on October 2, 2017.

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specialist. In public opinion, the “internist” is, moreover, often confused with “the intern”, a student in postgraduate medicine. While internal medicine developed as a specialty among others in the 1960s, according to Boinet and Pierru [BOI 10], this is a broad and holistic idea of medicine that has been considerably weakened in France for several decades by the emergence of the then growing influence of specialization dynamics left, right and center. Internal medicine appears weakly represented in France; the ratio of internists among specialists is about 2% against almost 15–25% – with a different system of care – in other European countries.14 In the hospital context, the literature offers a specific link between trust, safety and knowledge. It is thus “necessary to develop “better self-awareness” in order to learn to recognize oneself” [MIR 14, p. 38]. Recognition and its management take on an important role here, since the hospital manager must be a manager with meaning, within a system marked by profound changes and driven by profitability [BOU 13, GEO 12, HOL 16, RIV 12]. The expectation of recognition is expressed by professionals in general and especially by new entrants: “young professionals no longer enter these health professions or hospitals by vocation, or for them at least, vocation does not mean submission. They no longer choose, moreover, the hospital as the life-long career place and are looking to be listened to and recognized. They expect a management that takes into account what they are; they do not want to be considered as pawns” [MIR 14, p. 33]. In this context, traditional models of hospital management are questioned and raise questions in terms of innovation, beyond therapeutic or technological innovation [NOB 13]. This involves considering the possibility of using new models in innovative management, capable of transforming practices at the hospital by responding more appropriately to the organizational requirements and expectations of practitioners and patients. If the issue of recognition appears recurrently in hospital, it is accentuated for internal medicine faced with a necessary coordination and integration of care between different units. The eventual manifestation of bias – of a cognitive or emotional nature – by the actors of the medical units must be taken into account so that the interface between the services can be realized 14 Ibid.

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in good conditions. This consideration raises the question of introducing a balanced management of these different biases in a logic of efficiency. 8.3.3. Evolution of internal medicine Internal medicine is undergoing changes that can positively influence its place in the health care system. The current teaching reform during the third cycle of medical studies, initiated in 2009 and whose implementation was planned for November 2017, is one of them. This reform represents an important turning point in the evolution of the specialty [MOU 17] by bringing together internist physicians with their clinical immunologist colleagues. An internal medicine DES, a diploma of specialized studies in France, will be called “DES of internal medicine-clinical immunology”. The new teaching model will be organized in the form of a co-DES with the DES of infectious and tropical diseases (lasting 5 years) and the DES of allergology (lasting 4 years), with consistent and compulsory internships for students. This reform is an important step forward and sets the priority objectives for the coming years. On the basis of this new organization, there will be lessons to attract a larger and necessary number of students who will eventually be able to work as hospital practitioners in general hospital centers, by returning the discipline to its rightful place in the management of inpatients [MOU 17], thereby legitimizing it further. Note that internist doctors are also present in universities. They teach and award diplomas to students through job offers and also play a role as professors of universities/hospital practitioners and university lecturers/ hospital practitioners. They can supervise medical theses and thus participate in the recognition and development of their specialty. SNFMI also recalls the role played by continuing medical education among established practitioners, in particular with specialist physicians. The European Union of Medical Specialists also requires an internship in general internal medicine as a prerequisite for any specialization. SNFI finally recalls that internist activity in terms of basic and clinical research is important. It indicates that this research is often part of the priority themes proposed during the latest clinical research hospital programs, with publications notably in La revue de médecine interne, a peerreviewed scientific journal. As a result, many research protocols whose internists were co-investigators or principal investigators were funded under

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these national tenders. For example, the meetings with INSERM teams and the projects presented during the scientific council meetings at the internists’ six-monthly congresses testify to the dynamism of the latter in terms of research15 and contribute to their legitimacy with their peers. 8.4. Conclusion We first introduced the interface-actor as a transversal integrator, necessarily carrying legitimacy and trust, to promote the coordination and continuity of hospital care processes. We then presented the case of internal medicine and internist physicians in charge of coordinating and integrating care for complex cases in the health care system. Two main conclusions can be drawn from this work, on the one hand on the theoretical level and on the other hand at the managerial level. From a theoretical point of view, we have focused on the “integrated actor” in terms of mobilizing his abilities as a translator and a coordinator. The mobilization of these skills appears essential to foster a necessary climate of trust and legitimacy. The complexity of the task assigned to the transversal integrator, however, deserves further study to understand its different components and implications for patient care, particularly those with chronic diseases. At the managerial level, we stressed that the work of transversal integration required the overall care of the patient, which, paradoxically, does not fit, at least in France, directly into a notion commonly shared by the medical community and the general public. The broad and holistic conception of internal medicine could gain legitimacy and trust – through, for example, the reform of the third cycle of medical studies – by further highlighting its interest in patients and its implications in terms of performance for the hospital organization.

15 Website of the Société nationale française de médecine interne, available at: http:// www.snfmi.org/content/recueil-de-dossiers, accessed on October 2, 2017.

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8.5. References [BEJ 15] BEJEAN M., KLETZ F., MOISDON J.C. et al., “Informatisation incrémentale ou de rupture ? Le cas du dossier patient hospitalier”, Journal de Gestion et d’Économie Médicales, vol. 33, no. 7, pp. 445–467, 2015. [BLA 94] BLANCHARDIÈRE A. (DE LA), LE DINH T., “Histoire de la médecine interne”, La Revue de Médecine Interne, vol. 15, no. 10, pp. 690–693, 1994. [BOI 10] BOINET J.P., PIERRU F., “Plaidoyer pour la médecine interne. Regards croisés d’un sociologue et d’un interniste sur l’avenir de la médecine interne”, La Revue de Médecine Interne, vol. 31, no. 11, pp. 788–791, 2010. [BOU 13] BOURRET R., MARTINEZ E., VERT M. et al., “La certification des comptes des hôpitaux publics à l’horizon 2014 : un état de l’art au travers du témoignage du CHRU de Montpellier”, Politiques et Management Public, vol. 30, no. 4, pp. 571–581, 2013. [DEM 86] DEMAILLY A., LE MOIGNE J.L., Sciences de l’Intelligence, Sciences de l’Artificiel, Presses universitaires de Lyon, Lyon, 1986. [DIM 00] DIMAGGIO P., POWELL W.W., “The iron cage revisited institutional isomorphism and collective rationality in organizational fields”, in Economics Meets Sociology in Strategic Management, Emerald Group Publishing Limited, Bingley, pp. 143–166, 2000. [DIM 09] DIMAGGIO P., POWELL W.W., “Des organisations en quête de légitimité”, in CHARREIRE PETIT S., HUAULT I. (eds), Les Grands Auteurs en Management, EMS, Caen, 2009. [DUP 04] DUPOND J.L. (ed), La médecine interne en France, White book, C.N.P.I., Rouen, 2004. [EXP 17] EXPERTON B., “L’informatisation est l’avenir des patients et des systèmes de santé”, Les Tribunes de la Santé, no. 54, pp. 55–59, 2017. [FAV 89] FAVEREAU O., “Organisation et marché”, Revue française d’économie, vol. 1, no. 4, pp. 65–96, 1989. [GAD 99] GADREAU M., JAFFRE D., LANCIAU D., “La recomposition en réseaux du système hospitalier. Entre contraintes, contrats et conventions”, Revue Finance Contrôle Stratégie, vol. 4, no. 2, pp. 53–75, 1999. [GEO 11] GEORGESCU I., COMMEIRAS N., “Les effets de la pression budgétaire sur l’implication organisationnelle : une étude auprès des médecins de l’hôpital public”, 22e Congrès de l’Association Francophone de la Gestion des Ressources Humaines, Marrakech, Morocco, October 2011.

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[GEO 12] GEORGESCU I., NARO G., “Pressions budgétaires à l’hôpital : une étude qualitative du concept de RAPM auprès de praticiens hospitaliers”, Comptabilité, Contrôle Audit, vol. 3, pp. 67–96, 2012. [GLO 01a] GLOUBERMAN S., MINTZBERG H., “Managing the care of health and the cure of disease-Part 1: Differentiation”, Health Care Management Review, vol. 1, no. 26, pp. 56–69, 2001. [GLO 01b] GLOUBERMAN S., MINTZBERG H., “Managing the care of health and the cure of disease-Part 2: Integration”, Health Care Management Review, vol. 1, no. 26, pp. 70–84, 2001. [HOL 16] HOLCMAN R., “Hôpital public et redditions de comptes”, Revue Française d’Administration Publique, vol. 4, no. 160, pp. 1109–1122, 2016. [LAW 67] LAWRENCE P.R., LORSCH J.W., “Differentiation and integration in complex organizations”, Administrative Science Quarterly, pp. 1–47, 1967. [LAW 73] LAWRENCE P.R., LORSCH J.W., LEDRU J., Adapter les structures de l’entreprise : intégration ou différenciation, Les Éditions d’Organisation, Paris, 1973. [LÉV 90] LÉVY P., Les technologies de l’intelligence : l’avenir de la pensée à l’ère informatique, La Découverte, Paris, 1990. [LOU 04] LOUNNAS R., “Théorie des institutions et applications aux organisations”, Cahier de Recherche, no. 4, 2004. [MAY 13] MAYERE A., “Communication organisationnelle et organisations de santé : enjeux et perspectives”, Communiquer, Revue de Communication Sociale et Publique, no. 8, pp. 99–111, 2013. [MIR 14] MIREMONT M.C., La dynamique “Ethique du care”, nouvel enjeu pour la gouvernance: contribution à l’analyse du concept et de sa pratique à l’hôpital, Thesis, Université de Pau et des Pays de l’Adour, 2014. [MON 01] MONTALAN M.A., VINCENT B., “Un modèle d’analyse de la coordination de l’action collective pour la prise en charge des personnes âgées en MidiPyrénées”, Journal d’économie médicale, vol. 3, no. 28, pp. 159–172, 2001. [MOU 17] MOUTHON L., “La réforme du troisième cycle des études médicales : quelle évolution pour la médecine interne?”, La Revue de Médecine Interne, vol. 38, no. 6, pp. 355–357, 2017. [NOB 13] NOBRE T., “L’innovation managériale à l’hôpital. Changer les principes du management pour que rien ne change?”, Revue Française de Gestion, vol. 235, no. 6, pp. 113–127, 2013.

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[OLO 15] OLOGEANU-TADDEI R., GAUCHE K., MORQUIN D. et al., “La capacité d’appropriation, une capacité organisationnelle immatérielle négligée dans l’adoption des systèmes d’information et de gestion”, Innovations, no. 47, pp. 79–100, 2015. [RIV 12] RIVIÈRE A., COMMEIRAS N., LOUBES A., “Performance et tensions de rôle à l’hôpital: une étude qualitative auprès des cadres de santé”, Congrès ARAMOS (Association de recherche appliquée au management des organisations de santé), Paris, France, 23 November 2012. [SCO 00] SCOTT W.R., Institutional Change and Healthcare Organizations: From Professional Dominance to Managed Care, University of Chicago Press, Chicago, 2000. [SCO 15] SCOTT W.R., DAVIS G.F., Organizations and Organizing: Rational, Natural and Open Systems Perspectives, Routledge, Abingdon, 2015. [SIM 82] SIMON H.A., Models of Bounded Rationality: Empirically Grounded Economic Reason, vol. 3, MIT Press, Cambridge, 1982. [SIM 83] SIMON H.A., Administration et processus de décision, Economica, Paris, 1999. [TAR 95] TARONDEAU J-C., WRIGHT R.W., “La transversalité dans les organisations ou le contrôle par les processus”, Revue française de gestion, no. 104, pp. 112– 121, 1995.

9 From Health Actors’ InformationCommunication Issues in the Workplace to Obstacles when Establishing a Relationship of Trust

9.1. Introduction Our contribution is based on the results of doctoral research [DUM 16] conducted with an integrated occupational health department within a large French industrial company. The presence of health professionals in companies is part of the employer’s legal obligation to “ensure safety and protect the physical and mental health of workers” [MIN 07]. However, with the broadening of the obligation scope to prevent employees’ health hazards, public authorities have strengthened the role of the employer who has been entrusted with implementing preventive measures. It is important here for us to question the company’s legitimacy to communicate on health and safety issues at work, particularly through health care workers whose mission is to inform and train employees on these topics. We formulate the hypothesis that the information and communication related to health prevention at work are part of the company’s legitimization strategy that the health actors reinforce but also divert through their information-communication practices for employees. We developed a communicational approach to health and safety prevention measures implemented in the company by health actors, to address them as Chapter written by Aurélia DUMAS. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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information-communication measures. Through this approach, we see to what extent the construction of company legitimacy is at the heart of the information-communication issues that the occupational health department actors meet, and contributes to the obstacles to establishing a relationship of trust with employees. In order to carry out our communicational approach to the prevention measures, we relied on the ACO program (approches communicationelles des organisations – organization communicational approaches) [BOU 07, BOU 13], which relies on a multidimensional communication interpretation of organizations. ACOs provide a framework for studying organizational phenomena from a communication angle, characterized by a triple approach. This corresponds to different levels of analysis such as communication situations resulting from professional interactions, information-communication measures structuring the organization as well as communication policies implemented as symbolic engineering [ALM 01, FLO 96, OLI 06]. Following this threefold perspective, the communicational approach adopted aimed to study the prevention mechanisms, with interest in the analysis of communication situations of occupational health actors and in the analysis of communicational policies released in the field of occupational risk prevention. In line with the ACOs, the research methodology adopted uses a combination of survey techniques in order to cross the investigation angles. Twenty field observations were carried out over more than one year (from June 2014 to November 2015), particularly during the interventions of health personnel.1 Forty-seven semi-structured research interviews were realized with team members from the occupational health department2 but also company employees. This qualitative approach was complemented by the creation of a corpus of documents, including a set of 27 health information and communication documents developed either by the actors from the occupational health directorate or by a company internal communication service. Through the study of the corpus, we tried, on the one hand to update the logic of producing information and communication documents released

1 Such as interviews with employees, medical visits, health personnel work meetings, etc. 2 A total of 21 health personnel belonging to the Occupational Health Department and comprising seven occupational physicians, five occupational risk prevention workers (IRPR) and nine nurses.

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to the company employees and, on the other hand, to confront the representations of health actors to content analysis.3 After questioning the construction of company legitimacy as a legally responsible entity for occupational health issue management, we study, in light of our research results, how the information-communication measures set up within the company participate in its legitimization and legitimacy strategy. Then, we show to what extent the health actors, carriers of these measures, tend to oppose such logic. We also highlight the information-communication issues that they are then confronted with. Finally, we question the way in which the company context represents an obstacle, on the one hand in the diffusion of health information and communication and, on the other hand, in the introduction of a relationship of trust with employees. 9.2. Building the company’s legitimacy in occupational health safety 9.2.1. The employer’s obligations As shown by research conducted in SCI [LAF 07, LAF 12, PAI 07, ROM 10, ROM 13], changes in the State’s report about the publicization of health topics and its prevention have been observed: health has gradually occupied a growing place in the public sphere and covers, depending on the subjects (AIDS, cancer, Alzheimer’s disease, influenza A, road safety, etc.), a set of actors and discourses that can compete with each other. In a similar vein, the study of changes in the French legal framework and actions taken by the public authorities highlights a progressive consideration of physical and mental health issues at work. At the end of the 19th Century, the birth of industrial hygiene [VIG 99, p. 244] gave rise to a strengthening of the legal framework in force for health protection and safety at work. This measure was consistent with an affirmation of the employer’s responsibility and role. 3 The data collected during the observations were condensed [MIL 91, STR 03]. The interviews were fully transcribed (more than 1,000 pages verbatim) and were studied using content analysis [BAR 13], with support for developing a thematic grid. Finally, a semio-hermeneutic approach was mobilized to analyze the corpus documents: it combines the semiotic study of images, texts, stories or practices to an analysis of institutional issues through the symbolic systems involved [BRY 11, BRY 13]. In addition, some corpus documents, with a dense textual content, were the subject of a discourse analysis [CHA 02, MAZ 05].

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In fact, the obligation to compensate for occupational risks imposed by the 1898 Act, which focused on the only industrial risks incurred by employees in factories, has changed over time, with the help of the jurisprudence of the Chambre Sociale de la Court de Cassation, in an obligation enshrined in the “asbestos” decrees of 2002.4 The law of December 31, 1991, which transposed the Framework Directive of June 12, 1989, into a national law within the French Labor Code, obligated the employer to guarantee the health and safety of its employees. The certification by the Chambre Sociale of the employer’s obligation of result, in the decrees of February 28, 2002, had the effect of engaging the employer’s liability by law just because of its non-performance. There was a shift from an obligation to compensate on behalf of the employer, after an accident at work or an occupational illness, to an obligation of prevention, corroborated and intensified by judicial analysis [BRI 13]. The employer was held to an obligation of results and not to an obligation of means in the matter: for this purpose, he had to set up “necessary measures” [MIN 07], in particular, through preventive actions, determined by his own policies, toward employees. However, in response to social demand, following the many highly publicized5 suicides of French employees, this obligation was reinforced with the national inter-occupational agreement on stress at work of July 2, 2008, which extended the prevention of occupational risks to psychosocial risks, which could affect the health or safety of employees (professional situations of stress, internal or external violence or moral or sexual harassment). 9.2.2. Biopolitical perspective and company’s legitimacy As Anne-Marie Gingras put it, in support of Max Weber’s work, legitimacy corresponds to a renewed erratic and dynamic process, of the construction order [GIN 08]. If, as the German sociologist states, legitimacy is akin to “the state of what is justified to exist” [WEB 95, p. 30], the researcher insisted on the complexification of the construction of legitimacy within the modern, expanded, social and critical public space. Legitimacy is a custom, and social recognition. In other words, it is a social issue.6 4 In particular, decrees n°00-10.051, 99-21.555, 99-17.201 and 99-17.221. 5 In 2006–2007, three Renault company employees and six employees from PSA Peugeot committed suicide. In 2008–2009, 35 suicides took place among the staff of the France Telecom group. 6 Therefore, legitimization is defined as the process by which an actor tends to build or establish his legitimacy with or in relation to other actors. In other words, legitimization is not legitimacy but its quest or its reconquest.

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Therefore, how can the construction of the company’s legitimacy be understood in order to take charge of information and communication related to health and safety at work? Several CIS researchers interested in prevention in the public health field [OLI 12, OLL 06, OLL 10, STA 12, ROM 13]7 have considered the legitimacy of public intervention and public communication conducted on the subject using the Foucaldian notion of biopolitics: “the way in which we have tried, since the 18th century, to rationalize the problems posed to governmental practice by the phenomena particular to a set of living people forming a population: hygiene, birth, longevity, race...” [FOU 04, p. 323]. We believe that such a perspective may also be relevant in the analysis of the company’s relationship with health and safety prevention at work. Because the company pursues, among other things, strong productive and economic objectives, the health of its members is part of an exploited resource to maintain. A reinterpretation of the notion of biopolitics, which crosses the issue of governmentality8 present in Michel Foucault’s work, in terms of company operation, provides an interesting perspective to think about when we speak of the construction of company legitimacy to communicate on issues affecting employee health. The biopolitical dimension of power tends to legitimize state action in the field of public health, with communication replacing coercion to the extent that it works by reinforcing self-restraint [OLL 10]. As a technique of governmentality, a circular relationship tends to be established between legitimacy and communication whose third term can appear alongside biopolitics: communication participates in a legitimization of the actors and de facto tends to build their legitimacy just as much as it is constitutive of it. It appears that public communication tends to base its legitimacy on the biopolitical objectives it pursues. In other words, the biopolitical dimension of a cause, or an action, can constitute an instance of legitimation of the State power to communicate about it.

7 If several works in SHS also use the notion of biopolitics developed by Michel Foucault [FOU 04] in the apprehension of the prevention issues or public health, we chose here to refer only to research conducted in CIS where thinking is connected with an analysis of public communication and public health. 8 The techniques for governing the population constitute what Michel Foucault called governmentality, that is to say, the way in which the conduct of men is carried out. Governmentality does not cancel out coercion but displaces its forms: disciplinary power is made safe, the bodies and control methods work in a more subtle way by moving the constraint toward the regulation of vital processes [FOU 94].

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According to this perspective, the transfer of responsibility between the State and the company with regard to the prevention of occupational risks can be understood as a legitimizing care framework by the company itself of occupational health and safety communication and information and facing strong managerial challenges. In fact, besides the regulatory nature imposed by the French legal framework which enjoins the company to implement a prevention communication, it is also a question for it to manage, regulate and preserve the vital resources of its employees, a biopolitical dimension which would constitute an entry point into the construction of organizational communication legitimacy in order to invest in the health field of its employees. This raises the question of circuits and the logic of producing health information and communication at work, as we see through the study of our research field. 9.2.3. Health actors: health information and communication producers within the company When a company’s workforce reaches more than 500 employees, the French Labor Code requires the employer to organize employee monitoring in matters of occupational health. The employer may decide to set up within the organization itself an autonomous occupational health service, whose health personnel are then employees of the company,9 while benefiting from professional independence and protective status guaranteed by law,10 which is the case for our research field. In fact, the occupational health department has two management assistants as well as health staff, namely occupational physicians, professionals in the field of occupational risk prevention and nurses, all of whom are employees of the company.11 Occupational health workers who belong to occupational health services have the specific role of responding to a task focused on the prevention of occupational risks to which employees may be the subject of. In other words, they are not 9 The employer may also use a business-to-business occupational health service, which is a service common to several establishments working on the same site. In contrast to an autonomous health service integrated into the company, the health workers of the occupational health inter-company services are financed through the subscriptions of the adhering companies and are therefore not employees of the companies in which they operate. 10 Notably, Article R. 4127-5 of the Public Health Code [MIN 04] as well as Articles L. 4623-1 to L. 4623-8 and R. 4623-2 to R. 4623-24 of the Labor Code [MIN 16]. See also for the IPRP, the decree of June 24, 2003 [MIN 03]. 11 In total, the Department of Occupational Health has more than 20 people who are company employees.

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reserved for care activities that are left to general medicine, except in cases of extreme urgency. According to these perspectives, the dissemination of information as well as communication around health issues constitutes the basis of their company mission. Health actors are therefore at the heart of health information and communication production in business, which our field survey confirmed. In addition, the company also uses its internal communication services, which produce and distribute occupational health information-communication content on a global and national scale. As we shall see, these two “circuits” for the production of information and health communication work in parallel and do not present the same logics of information and communication. Through our research, our objective was to understand the issues as well as the information-communication resources that occupational health professionals, as producers of information and communication in the health field, can be confronted with in the company. In other words, it has been a question of analyzing the “capacities to act through communication” [OLI 13, p. 19] of these health actors in the particular context of the company. Such an approach has led us to question the complex and ambivalent reports that health personnel have about information and communication, which are at the heart of the question of the company’s legitimacy construction. 9.3. Info-communication issues of health actors within the company 9.3.1. Between distance and alignment regarding institutional communication Health actors perceive the information and communication that comes from the company’s internal communication services, including those related to the prevention of occupational risks, as part of a promotional and managerial communication, echoing marketing codes, which the company uses, in particular, to legitimize its actions with employees. Indeed, information and communication in workplace health and safety are based on a strategy of company legitimization in the demonstration of means set up for employees in the prevention of occupational risks. A transfer of the company’s responsibility to employees, as noted by health actors, is then completed. Company policy tends to promote the identification of occupational risks not only by the professional prevention actors but also by the employees themselves. It promotes, in this regard, the information and

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training of employees on these topics (as claimed by the legislative framework in force), in order to guard against any failure in this area. The health players regret that the occupational risk prevention policy implemented within the company does not intend to directly address the structural and organizational sources of the problems identified. The positioning of the company is part of an employee empowerment strategy, according to control and sanctioning logic that rely on the deployment of information and communication as internal procedures and regulations to follow for the employee. Such information-communication measures thus guarantee the preventive role played by the company, especially before the law, and thus participate in a strategy of legitimizing the company. The preventive approaches introduced tend to remain confined to the individual level, failing to be able to think of the problems encountered at the company level or its environment and society, which would then correspond in part to a reconsideration of the company itself and its operating system. However, such logic tends to stumble over the values and professional identities [DUB 00, SAI 14] that health actors carry. They do not present the same vision of prevention as that promoted within the company. Trained in the activity clinic [CLO 06, CLO 10], their approach consists of understanding occupational health and safety in an integrative, collective and systemic way, in order to allow employees to gain reflection and action power and to question the company in its modes of operation and in the organization of the work it proposes. The non-alignment of occupational health actors toward the company’s logic of prevention results in a strong rejection of institutional communication perceived as a form of internal advertising, more in the public discourse displayed than in the framework of concrete actions. Therefore, occupational health actors do not wish to be associated by the employees to the company’s communication and tend, to this end, to develop an interpersonal communication of proximity, which works on the establishment of actor networks likely to disseminate, in turn, health information to other members of the company. However, “the grip of managerial communication” [OLI 13, p. 23] remains significant, and a certain gap appears between the representations of health actors and their information-communication practices, which answer, despite everything, to the dominant communication codes set up within the company, and borrow it from the “words of the company”, to quote an occupational doctor. Such communication strategies and logics, both remote and aligned, are partly linked to the search for legitimacy of the health actors

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themselves in relation to other employees. They testify to the tension that is emerging among these actors: between a desire for distance and distinction with respect to the so-called managerial communication [FLO 96, OLI 06] and a desire to be known and recognized within the company. 9.3.2. The lack of visibility and burden of health actors In the face of the “sea snake” that communication can represent, to use the formula of an IPRP, in the sense that the an issuer always runs the risk that it escapes him, the position of health actors appears to the less ambivalent, oscillating between a claim of distance and a quest for visibility within the company. The report maintained with regard to information and communication is therefore marked by tension, forcing them to take a paradoxical position, illustrating the results of some research work in SIC [LÉP 14, OLI 06], namely a stumbling block to the predominance of corporate communication. This kind of communication borrows from the marketing model and its brand logic and remains difficult to circumvent for the company’s actors. As health workers, actors of the occupational health directorate are not professionals in the information and communication field, which constitutes an obstacle in both the visibility of their actions and information that they seek to disseminate but also the burden that can be theirs within the company. There is a lack of resources in this area, especially as they recognize that they lack the necessary skills and means to develop information-communication activities that would enable them to have their voices heard in a differentiated way within the company. One of the perceptible consequences of this lower visibility within the company is a lack of knowledge on the part of the group employees as to the extent of their roles and their missions. Health care providers tend to regret not being sufficiently identified for prevention, which hampers the transmission of information but also the implementation of preventive actions, strictly speaking, among employees. They are thus more in demand during emergencies (tertiary prevention) and struggle to initiate primary prevention approaches within the company.12 The desire for recognition in 12 As defined by the World Health Organization, there are three types of prevention: primary prevention aims at eliminating or reducing risk factors at the source; the so-called secondary prevention tends to empower individuals to adapt to risk factors; lastly, the so-called tertiary prevention has a curative aim, since it involves treating individuals already suffering from risk factors [FLA 08, p. 50].

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and through the work environment is also part of strong communication issues: many health actors have expressed difficulty in not being integrated into company life while they themselves feel fully employed within the said company. However, for these actors, the whole issue in the production and dissemination of health information and communication at work is the establishment of a relationship of trust toward employees. In order to distinguish themselves from the company logic and institutional communication, the health actors tend to favor a mode of interpersonal communication which plays on proximity. Their goal is to get to know the other employees of the company, their jobs, their roles but also the daily work, the work activity, the gaps between the prescribed work and actual work, changes, and also current and future restructurings. In other words, they try to understand the company life. Between withdrawal and proximity, the lack of visibility and integration of these health actors can then constitute a key information-communication resource within a positioning strategy, conducive to the establishment of a relationship of trust with employees, necessary for the implementation of preventive actions, as we see. 9.4. The company and its communication policies: obstacles to establishing a relationship of trust 9.4.1. Primacy of control logic and employee concealment strategies Through distancing logics adopted in regard to the institutional communication previously mentioned, health actors try to establish bonds of trust with other employees, showing a position other than that of the company. With the strategy of accountability that it pursues, the company inspires a certain mistrust among employees with regard to the health information and the communication produced within the company, registered in control logics, just like a dominant managerial culture. Employees are afraid to be held responsible in case of an accident. In fact, with regard to the risks incurred by the company in terms of civil and criminal liability, but also from the point of view of the associated potential costs, the latter has put in place numerous control measures to determine the professional risks involved and the causes of accidents, which lead to the identification and designation of the responsible persons.

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The “zero accident” policy developed by the company is significant of the pressure exerted on employees in the event of occupational health or safety problems: site managers, with the help of their preventers, are charged with increasing the information and the preventive communications intended to reduce the number of accidents or to reach a goal of zero accidents on their sites. The reports requested by the company are numerous, which classify the different sites between them at a national and then worldwide scale, in order to sanction the lowest rated ones. One of the consequences of this type of approach is the fact that employees no longer dare to declare accidents, for fear of being worried or triggering an investigation that could expose them or harm their manager and, more broadly, their site, and then becoming subjected to the risk of being downgraded. Therefore, if, according to the figures, the accidents decrease, in fact, it is much more due to dissimulation strategies adopted by the employees which take place under the direct or indirect pressure of the working environment and then contravene to a preventive approach. Despite the awareness of health professionals about the role of the working environment on health and safety problems that employees may encounter, the discourses held within the company tend to incriminate employee behavior or even position the source of the problems on the side of the private sphere. The approach remains rooted in the employee’s logic of empowerment, which feeds the latter’s feelings of fear and guilt if problems or difficulties arise. Concealment strategies then put in place by the employees constitute a clear limit, both toward the validation of health information [PAG 12, p. 10] and of the relationship of trust [BIZ 08], which arises here to corroborate the issues of the company’s legitimacy. 9.4.2. The difficulty of talking for employees In the competitive context of the company, the difficulty of talking about health and safety problems is dealing with the fear of direct or indirect career repercussions. Some people fear relocation, which can occur as a result of the removal of one’s position, a poor annual professional evaluation or in response to a health problem at work, often in the context of RPS. The fear of a disavowal on the part of the company or even a labeling of the person by those in superior positions or other co-workers is a reason for concealment attempts observed among some employees. However, the information-communication prevention measures base their mode of functioning on employee expression; otherwise, the informationcommunication activities of prevention deployed are defeated. However,

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many of the employees surveyed feared a lack of anonymity that could be detrimental to their career or their image within the company, even with health care professionals, who are nevertheless subject to professional secrecy. Faced with the fear of exposure, or even a risk of indictment by the company, concealment and silence then become, paradoxically, a strategy to protect employees themselves, in response to accountability adopted by the company. Nevertheless, this default tactic marks the limits of preventive action. It also shows the obstacles encountered by the context of the company, in which it appears difficult, especially for the health actors, to initiate organizational changes from a structural point of view, with a view to reducing the sources of stress and tension in the work environment, limiting the scope of the information-communication activities of prevention. The difficulties for health professionals in establishing trusting relationships are closely linked to the information-communication issues they encounter within the company. But trust, which lies at the heart of the construction of legitimacy, both of the company and the health actors themselves and, therefore, health information and communications they produce and disseminate, is questioned here. The context of the company hinders the establishment of a relationship of trust between employees and the company itself, which tends to decline on the side of health actors. It is clear here to what extent the organizational context can be counter-productive from the point of view of prevention itself. Employees no longer dare to report problems or accidents they may be victims of in the workplace, to the extent that prevail control logic may play against them. 9.5. Conclusion Given the results obtained by a communicational approach of prevention measures developed within our doctoral work, and by relying on research work carried out in ICS, our purpose was to question the construction of company legitimacy to communicate about health issues. As such, we studied the logics and information-communication strategies developed by health actors who are entrusted with the task of informing, training and supporting the members of the company, when they organize employees’ access to work health and safety information.

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Health actors present a separate position within the company and a professional identity subject to certain antagonizing indecision [HER 01, GLÉ 12], which can be seen from a communication point of view through a positioning critical to the so-called managerial communication [FLO 96, OLI 06] deployed in the company and of which they wish to distinguish themselves from. Such orientations can be found partly in the logics and differentiated information-communication strategies that these actors present in relation to the institutional communication implemented, but also in the communication issues they may encounter. These justify, in particular, the low burden level that they face following strategic decisions related to the organizational functioning within the company. Health care stakeholders perceive the company’s communication as being part of a managerial and promotional communication, echoing the marketing codes [LÉP 14] that the company refers to, particularly in order to legitimize its actions toward employees [ALM 01, ALM 06]. If they are part of a distance logic from institutional communication in the prevention field, health actors tend to reproduce, in their information-communication practices for employees, the dominant codes of institutional communication, testifying to the influence of managerial communication and the strength of the context. As Céline Paganelli explained, “the context is based on a set of interacting elements. These elements [...] concern the actors, the multiple activities in which they are involved in, the information environment and finally the organizational environment in which they take place” [PAG 16, p. 176]. However, as we have seen, the company context constitutes a strong obstacle to the establishment of a relationship of trust that the efforts of health actors are seeking to reach, even if they intend to favor a proximity of interpersonal communication. The information-communication activities in which the actors of the company are engaged in concerning workplace health and safety measures prove to be dependent, beyond the environment and information culture, of the socio-economic environment and its stakes. The informationcommunication issues of health actors are therefore partly linked to the lack of company legitimacy to inform and communicate about occupational health issues. If the information-communication measures are indeed a strategy of company legitimization, which seeks to show itself as conforming with the legislative framework in force, the lack of trust or the mistrust of employees with regard to communication-related information activities as well as prevention measures deployed clearly demonstrates the

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lack of company legitimacy in this regard and even tends to delegitimize it in the transfer of responsibility that it operates on the side of the employees. 9.6. References [ALM 01] ALMEIDA N., Les promesses de la communication, Presses universitaires de France, Paris, 2001. [ALM 06] ALMEIDA N., “La perspective narratologique en organisations”, in DE LA BROISE P., LAMARCHE T. (eds), Responsabilité sociale : vers une nouvelle communication des entreprises ?, Presses universitaires du Septentrion, Villeneuve d’Ascq, pp. 27–39, 2006. [BAR 13] BARDIN L., L’analyse de contenu, Presses universitaires de France, Paris, 2013. [BIZ 08] BIZOURN P., “Le médecin, le malade et la confiance”, Éthique et santé, pp. 165–172, 2008. [BOU 07] BOUILLON J.L., BOURDIN S., LONEUX C., “De la communication organisationnelle aux approches communicationnelles des organisations: glissement paradigmatique et migrations conceptuelles”, Communication & Organisation, no. 31, pp. 7–26, 2007. [BOU 13] BOUILLON J.L, Concevoir communicationnellement l’organisation. Contribution à l’analyse des rationalisations organisationnelles dans le champ de la communication organisationnelle, Thesis, Toulouse University, 2013. [BRI 13] BRIMO S., L’État et la protection de la santé des travailleurs, LGDJ, Paris, 2013. [BRY 11] BRYON-PORTET C., “L’approche sémio-herméneutique : une nécessité pour étudier les dispositifs symboliques des organisations et leurs enjeux communicationnels”, Communication & Organisation, no. 39, pp. 151–166, 2011. [BRY 13] BRYON-PORTET C., “Étude sémiotique d’une communication fondée sur la contextualisation et les processus : du rôle des représentations symboliques et pratiques rituelles de la franc-maçonnerie”, Actes Sémiotiques, no. 113, 2013. [CHA 02] CHARAUDEAU P., MAINGUENEAU D. (eds), Dictionnaire d’analyse du discours, Le Seuil, Paris, 2002. [CLO 06] CLOT Y., “Clinique du travail et clinique de l’activité”, Nouvelle Revue de Psychosociologie, no. 1, pp. 165–177, 2006.

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[CLO 10] CLOT Y., Le travail à cœur. Pour en finir avec les risques psychosociaux, La Découverte, Paris, 2010. [DUB 00] DUBAR C., La crise des identités : l’interprétation d’une mutation, Presses universitaires de France, Paris, 2000. [DUM 16] DUMAS A., Approche communicationnelle des dispositifs de prévention de la santé et de la sécurité au travail : penser la communication organisationnelle comme communication affective, Thesis, Grenoble Alpes University, 2016. [FLA 08] FLAJOLET A., Peut-on réduire les disparités de santé ?, Report commissioned by the French Minister of health, youth, sport and associated life, La Documentation française, Paris, 2008. [FLO 96] FLORIS B., La communication managériale. La modernisation symbolique des entreprises, Presses universitaires de Grenoble, Grenoble, 1996. [FOU 94] FOUCAULT M., Dits et écrits, vol. 4, Gallimard, Paris, 1994. [FOU 04] FOUCAULT M., Naissance de la biopolitique. Cours au Collège de France 1978–1979, Gallimard, Paris, 2004. [GIN 08] GINGRAS A.M., “La construction de la légitimité dans l’espace public”, Politiques et Sociétés, vol. 27, no. 2, pp. 3–9, 2008. [GLÉ 12] GLÉONNEC M., “Dispositifs de médiation comme résistance au changement ; crise identitaire et quête de reconnaissance dans les services de santé au travail”, in CORDELIER B., GRAMACCIA G. (eds), Management par projet : les identités incertaines, Presses de l’Université du Québec, Quebec, 2012. [HER 01] HERREROS G., “Identités professionnelles et dynamique de changement”, in Il suffit de passer le pont, Éditions La Ferme du Vinatier, Bron, 2001. [LAF 07] LAFON B., PAILLIART I., “Malades et maladies dans l’espace public”, Questions de Communication, no. 11, pp. 7–15, 2007. [LAF 12] LAFON B., OLIVEIRA J.-P. (de), “Le cancer et la maladie d’Alzheimer, des chantiers présidentiels. De la gestion moderne des maladies aux stratégies communicationnelles des présidents Chirac et Sarkozy”, Communication, vol. 30, no. 1, pp. 1–16, 2012. [LÉP 14] LÉPINE V., MARTIN-JUCHAT F., MILLET-FOURRIER C. (eds), Acteurs de la communication des entreprises et organisations. Pratiques et perspectives, Presses universitaires de Grenoble, Grenoble, 2014.

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[MAZ 05] MAZIÈRE F., L’analyse du discours, Presses universitaires de France, Paris, 2005. [MIL 91] MILES M.B., HUBERMAN M.A., Analyse des données qualitatives : recueil de nouvelles méthodes, De Boeck-Wesmael, Brussels, 1991. [MIN 03] MINISTÈRE DES AFFAIRES SOCIALES, DU TRAVAIL ET DE LA SOLIDARITÉ, Decree no. 2003-546, Labour Code, article 1, JORF, no. 146, available at: https://www.legifrance.gouv.fr/eli/decret/2003/6/24/SOCT0310673D/jo/texte, 24 June 2003. [MIN 04] MINISTÈRE DES SOLIDARITÉS, DE LA SANTÉ ET DE LA FAMILLE, Decree no. 2004-802, Public Health Regulations, article R 4127-5, JORF, no. 183, available at: https://www.legifrance.gouv.fr/affichCodeArticle.do?cidTexte= LEGITEXT000006072665&idArticle=LEGIARTI000006912866, 29 July 2004. [MIN 07] MINISTÈRE DU TRAVAIL, DES RELATIONS SOCIALES ET DE LA SOLIDARITÉ, Ruling no. 2007-329, Labour Code, article L 4121-1, JORF, no. 61, available at: https://www.legifrance.gouv.fr/affichCode.do?idSectionTA=LEGISCTA000006 178066&cidTexte=LEGITEXT000006072050&dateTexte=20090528, 12 March 2007. [MIN 16] MINISTÈRE DU TRAVAIL, DE L’EMPLOI, DE LA FORMATION PROFESSIONNELLE ET DU DIALOGUE SOCIAL, Decree no. 2016–1908 regarding the modernization of occupational medicine, Labour Code, JORF, no. 0302, available at: https://www. legifrance.gouv.fr/affichTexte.do;jsessionid=095BD552F6331111C3C32C661DD 048F9.tpdila18v_1?cidTexte=JORFTEXT000033723789&dateTexte=20161230, 27 December 2016. [OLI 06] OLIVESI S., La communication au travail. Une critique des nouvelles formes de pouvoir dans les entreprises, Presses universitaires de Grenoble, Grenoble, 2006. [OLI 12] OLIVEIRA J.P. (de), Communication publique et formes de gouvernabilité contemporaines de l’État. Le cas de l’homosexualité dans les campagnes de prévention du sida en France (1987–2007), Thesis, Stendhal University, 2012. [OLI 13] OLIVESI S., La communication syndicale, Presses universitaires de Rennes, Rennes, 2013. [OLL 06] OLLIVIER-YANIV C., “La communication publique : communication d’intérêt général et exercice du pouvoir”, in OLIVESI S. (ed.), Sciences de l’information et de la communication. Objets, savoirs, disciplines, Presses universitaires de Grenoble, Grenoble, pp. 97–112, 2006.

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[OLL 10] OLLIVIER-YANIV C., “L’action publique contre le tabac : paradoxe discursif et enjeux politiques de la communication institutionnelle”, in ROMEYER H. (ed.), La Santé dans l’espace public, Presses de l’EHESP, Rennes, pp. 69–78, 2010. [PAG 12] PAGANELLI C., Une approche info-communicationnelle des activités informationnelles en contexte de travail : acteurs, pratiques et logiques sociales, Thesis, Stendhal University, 2012. [PAG 16] PAGANELLI C., “Réflexions sur la pertinence de la notion de contexte dans les études relatives aux activités informationnelles”, Études de Communication, no. 46, pp. 165–187, 2016. [PAI 07] PAILLIART I., STRAPPAZZON G., “Les paradoxes de la prévention des cancers : publicisation et privatisation”, Questions de Communication, no. 11, pp. 17–31, 2007. [ROM 10] ROMEYER H. (ed.), La santé dans l’espace public, Presses de l’EHESP, Rennes, 2010. [ROM 13] ROMEYER H., “Penser la prévention : discours, acteurs et dispositifs”, Communication & Langages, no. 176, 2013. [SAI 14] SAINSAULIEU R., L’identité au travail, Presses de Science Po, Paris, 2014. [STA 12] STAII A., “La fabrique sociale : autonomisation et légitimation dans le domaine de l’information de santé”, Netcom, vol. 26, nos 1–2, pp. 55–76, 2012. [STR 03] STRAUSS A., CORBIN J., “L’analyse de données selon la grounded theory. Procédures de codage et critères d’évaluation”, in CEFAÏ D. (ed.), L’enquête de terrain, La Découverte, Paris, pp. 363–379, 2003. [VIG 99] VIGARELLO G., Histoire des pratiques de santé. Le sain et le malsain depuis le Moyen âge, Le Seuil, Paris, 1999. [WEB 95] WEBER M., Économie et société. Les catégories de la sociologie, Plon, Paris, 1995.

10 Connected Health: Between Common Aspirations and Specific Interests

10.1. Introduction: connected health, a notion in search of a referent Digital health is a new and extremely dynamic field, which is constantly being reshaped by an abundance of initiatives and which therefore still remains unstructured from a conceptual standpoint. This is evidenced by the diversity of concepts (e-health, m-health, telehealth, telemedicine, etc.) and the difficulty of stabilizing the use of these terms, despite regular efforts to clarify their meaning (see for example the French decree of October 19, 2010 on telemedicine, which proposes a set of legal definitions). These attempts, however, remain ineffective and the terms in use are often out of line with the reality of the devices in use and with the strategies of an increasing number of players with an interest in health issues. Although it is less common in scientific or professional literature, we chose to use the term “connected health” in this chapter. However, that is precisely what makes it interesting for us. The terms now given as “e-health” or “m-health” already operate as prenotions, although when we look at how they are used, we find almost as many definitions as occurrences. However, despite fluctuations, established uses already impose a framework of thought that generally concentrates on the medical applications of digital devices. On the contrary, we believe that in order to comprehend current changes, we

Chapter written by Adrian STAII. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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should not strictly isolate medical applications from broader health applications (such as those developed or prescribed by insurers, for example). Even applications to promote a healthy way of life and behavior that we could relate a priori to the field of well-being should not be neglected from our viewpoint either. For many reasons that will be discussed throughout this chapter (synergies between uses, equipment versatility, industrial strategies, data pooling, transfer of expertise, etc.), the three areas mentioned above seem, to us, to be inseparable. The term “connected health” applied to this heterogeneous whole is precisely a way of acknowledging interconnections and an invitation to explore them. Health professionals make the same observation: “Borders are increasingly blurred in the connected health world and it becomes difficult, if not uncertain, to make an absolute distinction between the devices, apps and connected objects used in the field of well-being, in that of health and in the practice of medicine.” [CNO 15, p. 9] Although “connected health” does not impose an already defined referent, it nevertheless carries strong hypotheses. We could apply two reading grids to the current transformations. The first grid would emphasize the emerging character of digital device practices that reorganize health, while highlighting the specificities of this field and its very strong autonomy due to extremely diverse factors (complexity of expertise, importance of regulation, strength of professional organizations and cultures, special attention paid by the political and social authorities because of the eminently sensitive nature of health, etc.). This reading grid would thus question the importance of the current transformations of heath and it would take into account the proven ability of traditional health actors to absorb innovations, both those emerging from within and those coming from elsewhere. The underlying idea is that the health field preserves its relative autonomy. This autonomy manifests itself, today as well as in the past, by the control of medical expertise, the high specialization of the skills and of the equipment used in this field, the precision of the regulation and the strong selection of the players who are authorized to operate in this area (health care establishments, industrialists, insurers, etc.).

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The second reading grid would emphasize more the articulation between, on the one hand, the current transformations of health and, on the other hand, important societal changes and the emergence of new players who come in particular from the IT and digital industries and have shown a recent concern for health issues. This interpretation would lead to a series of questions about the very delineation of health issues and about the actors who could legitimately address them. It would also question the significance of current reorganizations in the light of the particular socio-historical context where the aspiration for a general “health improvement” emerges and where various actions aim at responding to it (among these actions, we should mention the highly technological medical research, the rationalization of the public resources, the emergence of profitable markets focused on health and well-being, etc.). The underlying concept is that of a gradual disempowerment of health under the combined effect of its expansion, now extended well beyond the medical field, and the penetration by exogenous logic. These two reading grids are undoubtedly necessary and complementary because none could claim to explain all of the current phenomena. Nevertheless, it seems to us that the second grid is more heuristic from an information–communication viewpoint and, above all, more urgent, because it encourages us to discuss the hypothesis of a transformation of the status of health with many societal stakes. In the following, we will propose the second grid. First, we will defend the idea of a structural transformation of the social status of health. We will do so by highlighting the articulations of current processes with sociohistorical transformations. In a second step, we will discuss the expectations and the roles of the actors concerned by health issues and we will highlight transformations where new health logics seem to be forged. We will conclude by insisting on a particularly important transformation of the relationships between the various actors of health. Connected health indubitably affects trust which needs to be rebuilt. We will base our analysis on data extracted from a set of documents produced by public authorities (Haute autorité de santé [French High Health Authority]; Commission nationale informatique et libertés [French National Commission for Informatics and Liberties]; Conseil national de l’Ordre des médecins [French National Council of the Order of Physicians]; European Commission; World Health Organization; etc.) and by many private

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organizations (insurers, interest groups, research firms, market research institutes, etc.). These documents, quoted in this chapter but presented following the bibliographical references as a separate list, are useful because they give a hint of the diversity and richness of the views expressed in this field. Some surveys also provide very precious empirical data. However, these sources also have certain disadvantages. In addition to its incompleteness, this “corpus” has the disadvantage of often mixing the observation register with the expertise register and the promotional discourse register or the political statement. This superposition calls for a permanent double reading which will not be always an easy task because the confusion of the discourse registers may often mislead. Yet, it is also due to its complexity that the corpus can prove useful; it informs us not only about the current transformations, but also about the voluntarist and sometimes performative discourses of some actors. 10.2. Multiple paths of a historical disempowerment of health Health management, as it seems to be promoted today through the use of connected devices, concerns as much the body and mind as their perceived images: well-being emerges at the junction of these two perimeters, one biological, with its physiological and mental dimensions, and the other symbolic, with its imaginary and psychological dimensions, fed by personal aspirations and social norms. It is therefore important for individuals not only “to be in good health” but also to believe in it, to make sure that they are, and ensure that they have taken every precaution necessary to stay healthy [MAR 14]. Many devices nowadays allow us to measure, monitor and interpret an individual’s health. Digital technologies make it even easier for individuals to access these resources. They provide “practical” tools allowing all kinds of self quantifications which carry out a large number of representations and norms. Individuals must confront these norms if they want to quantify themselves, and the regular confrontation invites them to conform to these very norms. This reading of an individual’s relationship with health highlights the fact that it results from the interconnectedness of imperatives, aspirations and norms which promote health sometimes as a goal and often as a means or an argument in the service of other purposes. Health issues are clearly

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inseparable from bio-political management [FOU 94]; they are the convergence point of norms and aspirations that go far beyond any delineated health consideration [ELI 03, VIG 19]. The complexity of this interconnectedness has been increasing recently, among other reasons because the medical progress, the market interests and the reorganization of the public policies are being synchronized with a self-centered quest of meaning within a society which constantly addresses new challenges to the individual. This characterization of the social status of health draws the background of the current expansion of connected health. But it also needs to take into account the social demands addressed to medicine and the objectives assigned to the health system. For at least a few decades now, the medical mission has evolved from the introduction of curative actions, when and where possible, taking into account the state of scientific progress and the means available, to the need to prevent or, failing that, the obligation to cure. The elimination of risk per se, and not its consequences, is now the imperative for medicine and the health system. This evolution is as much the result of the progress of medical knowledge and the consequence of social aspirations and economic constraints. In the medical field, the emergence of evidence-based medicine in the 1980s reorganized medical practice around the following three pillars: practitioners’ clinical experience; state-of-the-art clinical research; and the collection of data likely to provide an “up-to-date” description of the “facts” related to the health problem being treated. This last aspect of medical practice has been constantly gaining importance in the context of all types of database proliferation that can be exploited for medical purposes and the constant widening of access to these data. This access is supported, among other things, by the digitization of media and the generalization of connections. Connected health devices that are being created currently allow the supply of data in a wider scale (making it more heterogeneous at the same time) and they also broaden the horizon for possible uses. Practically at the same time, the “predictive medicine”, inspired by Jean Dausset’s pioneering work and pushed further by the decoding of the human genome, paved the way for a science that, ideally, would be able to diagnose and eliminate the disease even before the first symptoms could develop. This approach to medicine arouses strong reluctance because of its many ethical implications, and the socio-political agenda regularly revives debates, as has recently been the case with medically assisted procreation techniques.

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However, beyond these particular stakes, this new approach to medicine sets out, above all, another vision of risk management. Risk detection and prevention can now be approached in a personalized way, taking into account all the factors that can affect health, whether they are related to the personal experiences and lifestyle or the genetic characteristics of the individual. The risk is no longer the expression of a statistical distribution that arbitrarily decides an individual’s fate but the materialization of individual factors that can be known, influenced or eliminated. While evidence-based medicine interprets individual cases in light of collective data, predictive medicine mobilizes general knowledge for personalized diagnosis and unique solutions. The two approaches are complementary, and their long-term convergence results in the consolidation of a new medical mission corresponding to a new social ideal: the knowledge, measurement and elimination of risk by all means. This new vision addresses a particularly strong injunction to each individual: the possibility of knowing becomes an individual requirement of comprehension and action. The individual is thus invited to modify behaviors (diet, way of life, etc.), but, in the long run, he/she is also encouraged to adopt preventive measures that may lead to treatments or interventions which are supposed to eliminate the probable consequences of a perceived risk, the case of breast cancer being among the most publicized recently. Moreover, risk management becomes an essential issue in our societies where scientific and technical progress have generated increasing anxieties and have created gaps between idealistic and realistic choices, between aspirations and limits [BEC 08]. The emergence of these “risk societies” could be linked to a series of empowerments operating on two interconnected dimensions: empowerment of the technologized social world in relation to the natural world [ELL 77, HEI 58] and empowerment of individuals in relation to the community [EHR 10, ELI 03]. The first form of empowerment is related to the development of science and technology that transforms and restricts nature. However, these scouts of progress play ambivalent roles. They can simultaneously cause risks, designate them, sensitize people to their management and provide solutions to avoid, eliminate or control them. Furthermore, when it is impossible to predict and especially when it is impossible to act, society suddenly finds

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itself destitute and seeks to protect the belief in the omnipotence of prediction by deploying managerial approaches to identify the error and avoid its reoccurrence in the future. In other words, society seeks to protect its belief in its own autonomy. The second form of autonomy shifts the center of gravity of the society from the community towards the individual. This form of empowerment, involving sociopolitical [CAS 75] and psychological dimensions [ELI 03], is no longer an aspiration but already a common condition [EHR 10, EHR 11] full of promises but also a burden difficult to carry out. This form of empowerment is thus a requirement of action for oneself and for the community, by oneself and by the community. The interpretation of empowerment through the individual prism [MAR 14] indisputably urges each person to act according to a dual principle of responsibility, toward oneself and toward others. This latter form of responsibility concerns at least the close persons but it may extend progressively to the “others” as a whole. This interpretation of empowerment as collective dynamics leads us to question the resources capable to support individual empowerment, whether based on public policies or market strategies [ILL 06, STA 12]. Connected health devices definitely contribute to it. The crisis of the welfare state and the ideologies that have accompanied it (economic and social progress, generalized protection, etc.) is inevitably extending to the last bastion of health. The crisis of an old world that is dying and of a new world that is struggling to come to birth is enhanced by the constraints of a difficult economic period which makes the quest for alternative answers an even more urgent task. The technological swarming that is now taking hold of health must also be interpreted in light of this economic context [COM 14, OMS 11, POS 16, PWC 13]. “Telehealth” is thus a dual-virtue solution, both medical and managerial. By way of its more accessible forms for treatment such as remote consultation practices, more advanced telemonitoring or remote medical intervention, telehealth aims to achieve “better care” by rationalizing and relocating medical expertise. On the one hand, telehealth responds to the imperative need for prevention and ongoing risk management; on the other hand, it echoes the economic issues of an aging demography that will eventually require assistance, on a scale unheard of in the past. Telehealth also appears to be a solution to the medical deserts which create new territorial inequities and to the limited resources of the hospitals which are

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forced to rationalize medical interventions and patients’ monitoring according to the spirit of the “new management of the public service”. These scientific, political and managerial orientations find both material and ideological resources in the spectacular technical advances of the last few decades: the generalization of digital infrastructures, computerization and wide circulation of information [MIÈ 07] and the generalization of digital uses are looming on the horizon of connected medicine and make it increasingly accessible. These evolutions open up not only perspectives of socio-technical innovation but also considerable markets. Unlike traditional health-oriented markets, which were invested in by stable actors within clearly defined perimeters (hospitals and various service providers, pharmaceutical industries, specialized equipment manufacturers, insurers), connected health attracts an increasing number of external players, starting with intermediation platforms, manufacturers of specialized or general-purpose connected equipment (trackers and e-textiles, home automation objects, etc.) and application providers. In the following section, we propose a typology of actors’ interests and strategies in the health field. This discussion will bring to light breaking lines where new logics may emerge and reshape the health field. 10.3. New economic configurations of connected health Connected health is the meeting point for many players with particular interests: – individuals (patients or healthy people) who are beneficiaries of health facilities; – various associations and collectives for the defense of patients’ rights; – health professionals (doctors, caregivers, pharmacists, etc.) who are traditionally at the center of health care services; – various establishments providing health services (hospitals, clinics, medical centers, etc.); – medical equipment industries; – pharmaceutical industries; – insurers and health mutual funds;

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– public institutions (national or transnational) in charge of health policy development, financing and regulation of the health system; – NGOs and various associations that carry out expert or supervisory duties; – various digital industries (application providers, download platforms, various equipment manufacturers, etc.). At present, all these actors are concerned with the development of connected health, but they approach this collective concern from different viewpoints and interests. For users, the interest in medical applications resides above all in the improvement of care. This improvement can be achieved, for example, by better information and communication (in terms of access to information and communication with specialized structures), by better monitoring, particularly in the case of chronic illnesses, or by assisting with the administration of treatment (like drug treatment for example) [PWC 14, p. 7]. According to a survey published by the European Commission [COM 17], the use of connected medical devices is currently limited. It concerns about 18% of Europeans, but a majority is now favorable toward them if the devices allow access to their medical file (52%). The question of device control and that of data exploitation remain decisive when it comes to adoption. Thus, 65% of respondents are in favor of the data collected being used by doctors, only 14% are in favor of exploitation by third parties (private companies or public authorities, even if the data were anonymous) and 21% declare themselves to be in favor of exploitation for scientific research purposes. However, as for all the uses of digital devices, policies move with time and these reluctances will evolve. In comparison, within a few years, the stand of French people on connected objects as a whole has evolved significantly [CRE 15, p. 15]: in 2015, 39% declared that they are in favor of the use of these devices, whereas this number was only 29% in 2011. This gap is notable in the context where the percentage of actual users remains low (4% in 2011 and 6% in 2015). Connected health objects (connected watches, electronic scales, sleep analysis devices, etc.) are considered with more reluctance: 28% of French people see a particular interest in using a connected device that detects movement, calculates calories, measures the heart rate or collects

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information to manage health; 24% support the use of connected electronic scales that transmit information to an application to monitor weight and 21% are open to using a device that monitors sleep and transmits this information to an application aimed at optimizing sleep. The uses are still very limited, but attitudes are becoming more and more favorable. Given the novelty of these technologies, the results cited are rather encouraging for all those who see connected health objects as an opportunity to be seized upon. This is all the more so since the uses of health applications are increasing rapidly. According to an IPSOS survey [IPS 16], 43% of French people use a “health and well-being” application, the two most important motivations being fitness (35% users) and health information (23% users). It is interesting to note that, despite these rather high percentages, the confidence index in the applications used remains rather low (4.7 out of 10). For a large majority of French people (72%), the labeling of applications would be decisive to reinforce confidence in the device and strengthen use [IPS 16]. The main concerns related to the use of applications are the protection of personal data, content quality and security. For health care professionals, the interest in medical applications is also to improve care, as illustrated by the following quote from the “Santé connectée” white book published by the Ordre des Médecins (CNOM1): “E-health – and now m-health – should be seen not as an end but as a set of means to improve access to care, care quality, and patient autonomy.” [CNO 15, p. 7] If this goal seems consensual, some studies highlight the reluctance of medical bodies with respect to connected health devices. A survey conducted in several countries (France was not part of the survey, but the European Union was represented by countries such as Germany, Spain and Denmark) showed that 42% of doctors questioned feared that the use of health applications would lead to patient independence [PWC 14, pp. 9–10]. Paradoxically, this percentage was even higher among young doctors: 53% of them feared patient empowerment. Is this fear of losing legitimacy expressed by those having less professional experience or a sound judgment based on a better knowledge of the connected world and its possible dangers? Difficult to say. According to the survey mentioned, only 27% of physicians encouraged their patients to use apps, and 13% openly 1 Translated as the Royal College of Physicians in English.

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discouraged such use. In France, the percentage of doctors who advise health applications or connected objects to their patients is even lower. According to a Vidal survey, only 18% of respondents advised applications and 16% advised the use of connected objects [VID 16, p. 23]. The wish clearly expressed through the statements of the professional bodies (such as the CNOM) and the discourse of the health care practitioners converge on a key point: there is clearly a strong need to renew trust between all health actors, as connected health devices can produce, here as everywhere else, different results. The consequences related to the generalization of these devices depend on a whole series of factors and, in particular, the conditions of design and production, as well as the conditions that frame device usage. However, it is indisputable that these conditions go well beyond the action sphere of health professionals and patients. National governments and international bodies (European Union, World Health Organization, etc.) are also directly affected by these developments in a number of ways. These actors develop strategic orientations to promote and supervise the development of connected health devices and they can also help to finance them. Data from the World Health Organization [OMS 11] show varying magnitudes of public initiatives in most countries, regardless of their levels of development. Differences between the richest and poorest countries are confirmed, but they are relatively small (87% of rich countries versus 77% of poor countries have developed at least one mobile health project). However, these figures should be read while bearing in mind the very wide disparities in terms of access to mobile technologies (equipment and connections, for patients, but also for health personnel2) and, more generally, in terms of social practices favorable or not favorable to the generalization of connected health uses. The study mentioned above draws up an inventory of intentions and projects, not of real achievements and actual practices. It should also be noted that the most frequent public initiatives focus on devices with low technological complexity, for example, call centers (an

2 It should be noted that these disparities exist even within developed countries: for example, in EU countries, 33% of doctors in private organizations have access to mobile technologies connected to the workplace, compared with only 14% of practicing doctors in public organizations [PWC 14, p. 21].

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initiative present in 59% of countries) or toll-free numbers dedicated to specific health problems (in 55% of cases). At a first level, the objectives pursued by public authorities are undeniably convergent with those of doctors and patients. They aim at improving access to health and care quality. These objectives are particularly sensitive in developing countries, due to a significant number of material constraints which the traditional system can difficultly overcome (availability of medical personnel, number of medical structures and significant inequalities in territorial coverage, cost of care via traditional means, etc.). The major challenges that connected health systems are expected to face in many developing countries remain access to care, prevention (including infectious diseases) and education (contraception, hygiene, etc.) [COM 14, OMS 11, OMS 16a, OMS 16b]. However, on another level, public interest in mobile health cannot be dissociated from a managerial vision that becomes all the more salient as spending on the health system is significant and increasing. Studies show that developed countries have an interest in promoting the development of connected health first and foremost with the aim of reducing or reallocating their expenses. Some reports on behalf of the European Commission announce enticing figures: a pro-active policy favoring the development and adoption of connected health technologies could produce approximately 99 billion euro savings across the EU, benefiting both governments and private actors (76 billion euro reduction in public spending and 23 billion euro reduction in private spending) [PWC 13, p. 4, COM 14, p. 7]. In the absence of such a proactive policy aimed at removing the numerous barriers which are supposedly hindering the markets (economic and technological regulations, insufficient stimulation of innovative enterprises, instability of the sector’s economic models, etc.), the savings achieved through connected health devices currently represent only 6.6 billion euros [PWC 13, p. 5]. Reading this kind of document may provide information about the objectives of market players who seek to “awaken” public authorities and to convert them to their interests. But it also worries the reader because of a holistic prospective vision where the boundaries between health and well-being, privacy, citizenship and professional activity, risky behavior and illness are constantly blurred. The result is an avalanche of quantified forecasts which fail to prove soundness but which clearly draw the outlines of the

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economic logic leading to the disempowerment of the health field. Connected health therefore appears to be an instrument of the commodification of the human being, a management tool to clean up the public balance sheet and a lever to improve productivity on behalf of the employers. It can be read in several reports [PWC 13] that the development of “mobile health” would benefit 185 million Europeans. However, if we recall that the total population of the EU is about 500 million people, then it is clear that the desired initiatives not only concern medical applications. These technologies should enable 141 million Europeans “to improve their way of life” (a goal that probably requires some clarification given the number of people involved). It also states [PWC 13] that the number of people suffering from the three most prevalent health disorders in Europe – hypertension, smoking and obesity (affecting approximately 300 million people) – could be reduced by using various connected devices (regular monitoring of blood pressure, behavioral motivation, advice and personalized diets, etc.). The nobility of the cause is not in doubt, but the efficiency of these tools may be questioned. However, we can also remember that these initiatives would produce, in addition to 99 billion euros in direct savings related to health expenditure, 718 billion euros of additional savings for employers who would no longer have to suffer the consequences of a decline in activity or employee productivity because of their “illnesses” or risky behavior. While they are not the most active players at present, employers are also concerned about connected health devices and, given current trends, they are likely to become more so in the future. Some market players are already positioning themselves in this niche, such as Fitbit, one of the world leaders in connected devices. While most of the company’s products are designed for BtoC markets, Fitbit also offers a service for employers: the “Fitbit group health” offer aims to promote “corporate well-being”. The promotional discourse about the benefits of this service emphasizes that these collective programs foster a culture of well-being that enhances employee fitness and productivity3. Fitbit offers companies assistance in the choice of an appropriate welfare program, to sell at preferential prices (the company supports part of the costs) to the employees enrolled in the program the connected objects needed in order to perform fitness activities and to help in collecting and aggregating data (on behalf of the employees and the 3 Fitbit corporate wellness, Fitbit, San Francisco, available at: http//www.fitbit.com/fr/grouphealth, accessed on December 22, 2017.

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employer). It is easy to see the full potential of this type of device as a tool for managing human resources and work, beyond its supposedly disinterested humanistic virtues. The market is currently mostly represented by US companies or multinationals, but all trends are favorable to its expansion. For example, BP has already established a connected health program with Fitbit for 14,000 employees (as well as several thousand members of their families and retirees of the company). A few years ago, the media also relayed the example of Yahoo, which offered Jawbone bracelets to 11,000 employees, asking them in return to walk at least 160 km in the year. This action complemented other initiatives aimed at promoting physical activity (opening of gyms, reimbursement of contributions to gym clubs, etc.). In fact, it is worth noting that Yahoo’s CEO at the time, Marissa Mayer, was also a member of the board of directors of Jawbone. Health concerns are seldom distant from economic synergies. Connected health also benefits from a strong interest by insurers. Launched in the United States, the concept of usage-based insurance is gaining popularity and is gradually expanding to other continents, first through the personalization of insurance in less sensitive areas, such as housing and especially automobiles. For a number of years, American insurance companies have been proposing to regulate premiums according to driver behavior measured via the installation of boxes connected to their vehicles. In 2015, the concept was introduced in France by Direct Assurances, which is experimenting with the “YouDrive” offer aimed at a mainly young audience considered to be more high risk. However, there is no doubt that the insurance giant AXA, which owns Direct Assurances, supervises and closely monitors these experiments. In the field of health insurance, the use of connected health devices can be part of several scenarios likely to be developed [PRO 14, p. 25]. One scenario is based on a preventive logic aimed at promoting “healthy” behavior: insurers can encourage their beneficiaries to use various applications (connected or non-connected objects) to monitor their health and improve it. This approach may lead them to produce health applications themselves, to partially fund them through association with partners or, more simply, to select them and label them.

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Several insurers have already offered this type of service, experimentally or permanently. For example, Axa experimented with this principle when launching the “Modulango” in 2014 by offering its first 1,000 members a connected Withings bracelet. The device was used to collect data on participants’ physical activity and to set challenges to be rewarded with gifts (vouchers for use on welfare services or for purchasing other Withings products). Another example, permanent this time, concerns the insurer Malakoff Médéric, which now includes in some offers the “Vigisanté” program. This service offers policyholders the opportunity to evaluate their health profile and their risk factors in order to choose a personalized program (nutrition, physical activity, sleep, etc.) and to follow their progress on an individual scoreboard updated with data automatically collected by a connected object. A second scenario, already tested by some US companies, consists of regulating insurance premiums according to individual health data transmitted via mobile applications and connected objects. An example is the insurer John Hancock’s “Vitality” service, which allows a reduction in premiums and the purchase, at preferential prices, of Fitbit watches or Apple Watch devices, in exchange for personal data and enrollment in an appropriate physical training program. This kind of service is not currently a general practice, so the underlying principle is to give incentives. However, it would not be surprising to see incentives turn into penalties when the use of such connected equipment becomes common. The development of connected health can be the lever for a profound transformation of insurance systems [EWA 12]. Current insurance systems are based on two principles: the sharing of individual risk by the community and the calculation of risk probabilities allowing for the economic regulation of costs and contributions, which is essential especially in the case of private insurance. These two principles have developed progressively since the introduction of the first commercial risk insurance systems at the end of the Renaissance period. They acquired “scientific” foundations with the development of probability calculations and statistics from the 18th Century [DES 09].

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In the health field, their relevance has been reinforced by advances in medicine, which until recently supported the idea of individual protection based on the statistical distribution of risk. This logic was not only consistent with the instruments available for probing risk, but also with social aspirations and political ideologies that are currently fracturing. As we indicated in the previous section, many fundamental trends (medical, social, economic, etc.) now seem to favor an individual identification of risks and thus to reinforce the principle of “case-by-case” insurance, for which connected health techniques can be vectors of generalization. Another category of actors particularly active in the field of connected health includes various industrialists. These players are interested in this area mainly as an extremely promising market enabling them to develop or distribute equipment (sensors, end products) or services (various applications, cloud services, health data management, etc.). This generic interest should not mask the great diversity of companies, ranging from specialized start-ups to large multinationals, and the variety of the economic models experimented upon. A study of patents filed in the field of connected health objects between 2004 and 2012 (extended with partial data until 2014) provides information on the configuration of the industrial actors active in this field [PRO 14]. The study listed 2,322 patents, most of them filed in the United States (60%) and China (20%). Europe was less well represented (8%). France was ranked third among the European countries with 15 patents, after Germany (44 filings) and the United Kingdom (31 patents). The analysis of actors at the origin of patent filing shows a market that is currently scattered but which clearly has a tendency to be concentrated. A large majority of companies (90%) file one or two patents, which still represents 50% of all innovations. At the same time, a very concentrated group of actors emerges, made up of approximately 30 companies (corresponding to 2% of the total number of filers), which owns 30% of the filings. The concentration is even higher if we take into account the subsequent acquisitions of smaller companies by digital giants (Google, Apple, Samsung, etc.). Among these 30 actors who clearly aim to play a key role in the connected health field, we find general industrial companies such as General Electric, Siemens, Philips, Panasonic and Sony, which were already present, some for a long time, in the medical equipment field; IT and electronics

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giants, such as IBM, Microsoft, Intel, Qualcomm, Samsung, Google and Apple, for which health care equipment and services are nowadays strategic directions; sports equipment manufacturers such as Nike or Adidas, which seek to support their traditional markets (e.g. by offering digital coaching services to their clients) or to expand them (among others, through the development of smart textiles); new entrants specialized in well-being connected objects, such as Fitbit and, finally, companies, more or less recent, specializing in health such as Roche, Boston Scientific or Proteus Digital Health. This overview of the most innovative actors shows a gradual shift of the focal point of traditional medical industries. This shift is toward companies for which health is generally a recent market, but which have a very structured role due to the fact that, in addition to their financial strength, they can interconnect different markets. This is, for example, the case with Google, Apple or Samsung, which, because of their dominant position in the field of mobile devices (smartphones and tablets) and related services (operating systems and application platforms), can become true drivers of the use of connected health devices. These actors can benefit from the “network effects” generated by their traditional activities in order to sell connected equipment (connected watches for Apple and Samsung, glasses or connected contact lenses for Google to measure blood sugar in real time, etc.), to promote the use of their health applications (Apple HealthKit, Google Fit and Samsung Health) and launch data management services that aim to integrate health data of all users. If this last objective were to come to fruition, then the services envisaged would be prolific (“electronic medical records” (EMRs) extended to well-being could be available via a single application, support to medical research through the collection of big data and large scale clinical trials, personalized suggestions from insurers or various nutrition and fitness partners, etc). Some of these actors are developing an even more strategic vision of health and taking initiatives that go beyond the guidelines we have mentioned and which are about to create profitable markets. Google is probably one of the new players for whom health is not just an opportunity, but a strategic direction for development. This is evidenced by several experimental projects financed recently (exploitation of “artificial intelligence” for medical diagnosis, decoding of the genome and genetic engineering, exploration of the medical uses of 3D printers, etc.); the

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creation, within the Alphabet group, of subsidiaries dedicated to health issues (Verily and Calico) and several investments or buyouts of medical start-ups. Connected health is now an important market4, but its expansion will depend on the stabilization of the economic models. Three types of monetization solutions are possible, which are described below. The first economic model is based on the sale of connected equipment more or less specialized in health. We can distinguish two types of connected objects currently being marketed: portable connected objects (connected watches and bracelets, various sensors attached to the body and, in the near future, glasses or contact lenses, e-textiles, etc.) and fixed connected objects (integrated into household appliances or household objects, such as connected scales). There is also a third category, which is the subject of much research and speculation at present, but whose market is currently limited to medical applications: connected objects implanted in the body or ingestible objects (their potential scope being not only medical- or welfare-related, but also much broader, as is the case with RFID chips). The versatility of these technologies makes it difficult to account for them all together in the field of connected health. This versatility also clearly helps in generalizing the uses of connected health devices and, for some outsiders, it is the spearhead for entering these markets. For example, we might think that the connected Apple watch is a product considered too generic to be directly related to the health market. Yet, in addition to the wellness applications associated with this product, it is indisputable that Apple is aiming to position itself in the health care connected objects market and, ultimately, medical devices. This is evidenced by several “medical” studies recently funded by Apple that seem to show that the AppleWatch 4 The figures available are extremely variable, which is mainly due to the difficulty of defining the market perimeter. Some forecasts estimate the global market for mobile health at approximately $23 billion as of 2017 [COM 14], but this estimate would be mostly for medical applications and services. Other estimates put forward significantly higher figures, but they relate to a clearly larger market, that of connected objects as a whole. In 2013, there were 9 billion connected objects in the world generating a market of 1.9 trillion dollars. Forecasts (perhaps too optimistic) announce at least 26 billion objects by 2020 and a market that could exceed $7 trillion [PRO 14, p. 11]. Because of the difficulty in defining the market share of connected health among this group, due to the fact that many applications are versatile, it can be considered that well-being (including physical activities and nutrition) is by far the most targeted application of the devices intended for particular markets.

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could detect, with a relatively high accuracy, sleep apnea, hypertension or cardiac arrhythmia. The second economic model is based on the sale of services intended for individuals or, most often, for companies or public health services in general. This model is based on the development of applications intended for mobile devices and correlated (or not) with the sale of various connected objects5. The sale of applications to individuals is currently a minor solution because market growth depends on the desire of users to adopt these services. However, payment would clearly be an obstacle, especially for wellness applications. Moreover, the generalization of user payment seems unlikely, even for more mature markets, because of the presence of very powerful intermediate actors (Google, Apple, etc.), which reproduce here a financing solution favorable to the user, a solution which constituted their success on other “two-sided markets”. The remuneration by the user is currently a solution especially for specialized applications, which can be integrated in care pathways and for those which can benefit from a medical recommendation (diabetes, cardiovascular diseases, medically assisted procreation, etc.). For most applications, it seems to be essential to remain free of charge or at least partially free of charge. Free apps are financed by an increasing number of other players interested in the use of the device: equipment manufacturers, various public services, health institutions, employers, insurers, agri-food industries, sports equipment manufacturers, etc. The current typology of the application producer sector reinforces the preponderance of indirect financing scenarios.

5 The highest estimates speculate that approximately 325,000 health apps are available on major download platforms [RES 17, p. 11]. Google Play and the App Store rank first and second, respectively, with approximately 150,000 applications available on each platform. The “competitors” Windows Phone and Amazon Appstore offer only a few thousand applications. According to other sources, based on older data, the number of applications could be much smaller: 8,000 on Google Play and 20,000 on the App Store [CRU 15].

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Application producers can be divided into the following four broad categories: – 32% are linked with traditional health actors (9% to medical industries; 6% to pharmaceutical industries; 6% to insurers; 5% to hospitals; 1% to private doctors, etc.); – 28% are pure-players seeking to develop a lucrative business in the field of mobile health (Fitbit, Jawbone, Withings – a company recently acquired by Nokia – etc.); – 23% are outsiders seeking to enter health care markets (13% are computer and digital industries: Samsung, Apple, Google, etc.; 5% are market research institutes); – 11% are non-market organizations (4% are universities, 3% are NGOs, 1% are state services, etc.) [RES 17, p. 15]. Finally, the third model also relies on the provision of an application free of charge in exchange for the collection and marketing of data relating to user activity. This model is quite similar to the previous one. The difference is that the data would be exploited here according to Big Data logic and from a rather prospective or predictive viewpoint. The circle of actors interested in these aggregated data is also potentially very broad: public or private research institutions, pharmaceutical industries, market research institutes, insurers, etc. These models are, of course, ideal situations. In reality, they combine in most cases, allowing the best-positioned actors to diversify their sources of income. For example, Apple clearly combines the above-mentioned three models, the nodal point of the strategy being the generalization of the use of the HealthKit application. 10.4. Conclusion: trust, an ever-new challenge Data are at the heart of these economic models, both because it is on data collection that the quality of the services provided and the interest of equipment from the viewpoint of users are based and because data can also be the subject of direct monetization. It is therefore natural that users, health care professionals and public authorities keep an eye on the developments of connected health with some level of concern.

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This concern is all the more legitimate since the developments are at a fast pace and often take regulatory authorities6 by surprise. Uses are also progressing (promotional discourses and the playful and harmless appearance of certain applications have the ability to hide true reluctance7). Industrial actors often work on an international scale, while the regulations depend on fragmented bodies with different cultures. The very ambivalent experience of past initiatives in the field of digital health information certification8 shows how much more difficult the exercise may be this time, and the outcome is even more uncertain. The situation is all the more complex as several certification methods are now at play; not all mobilize the same expertise and seek to obtain the same type of trust. National public authorities [CNI 14, CNN 15, HAS 16], transnational ones [OMS 16c], different bodies in charge of the regulation of the health care professions [CNO 15], research organizations and researchers, but also private consortia [TRU 15] propose analysis of ethical and legal issues and compose codes of “best practices” for application editors and markets. Unfortunately, ensuring that these recommendations are followed is far from being achieved, especially since these bodies are competing in this field with other players who develop their own certification procedures and even their own labels9. While some of these actors are inspired by public 6 Where they exist because, according to a WHO report, only 22% of the 53 member countries of the “European region” would have a national body for regulating the quality of health applications [OMS 16c , p. 43]. 7 43% of French people use connected health applications, while their main reluctance is the exploitation of personal data; 72% of French people call for better labeling of applications [IPS 16]. While use among physicians is still low (18%) [VID 16, p. 23], the medical profession’s interest in labeling is even stronger than that of the population – 79% of doctors favor labeling by a medical society and 75% by a health authority [VID 16, p. 27]. 8 After several years of work, in 2013, the French High Health Authority took note of the difficulties of labeling health websites and announced the end of the project entrusted to the Health on the Net foundation (available at: http//www.has-sante.fr/portail/jcms/c_1590507/ com/to-a-evolution-of-the-certification-of-site-health). Much research on health information [CLA 10, PAG 14, STA 13] emphasized the diversity of information circuits and practices that make control and certification procedures extremely difficult. 9 There are currently many initiatives: in France, we can mention the mHealth Quality label developed by DMD; the e-Santé application developed by the Pasteur Mutualité Group and giving access to more than 800 preselected free health applications; the Medappcare label developed by the start-up of the same name and so on; internationally, we can cite specialized labeling, such as that of the Personal Connected Health Alliance, an organization backed by an NGO funded by the HIMSS group, a major player in information systems and medical management, not to mention the generic selections, especially those of Google Play and App Store, which offer their own categories of “health” applications.

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standards and mobilize independent expertise, others are clearly dependent on particular interests. This does not mean that the certification work is systematically biased, but the regulation thus made cannot be dissociated from the business strategy that these actors intend to consolidate in the health field. The diversity of these initiatives is also explained by the fact that connected health technologies mobilize diverse expertise that can all be called in one way or the other to legitimize prescription. In fact, trust can no longer rest solely on the recognition of the medical, scientific or public regulatory authority. From an observer’s viewpoint, a convenient solution would be to divide devices into two categories: applications designed by or with scientists and physicians (and intended for physicians or patients) and applications based primarily on technological and marketing expertise (for broad markets). However, this classification, which recalls the boundary between “medicine” and “health”, is less and less relevant, as we have shown in previous sections. Moreover, in all cases, connected health necessarily involves technological players (equipment manufacturers and providers), and, increasingly, intermediaries (application platforms, cloud services, etc.). These manufacturers bring another kind of expertise, which is now just as indispensable. However, the interdependence of expertise allows for transfers of trust that help forge hybrid forms of legitimacy, which can be described as “techno-medical”. In the same way that traditional health actors benefit from this transfer when implementing specialized applications, digital actors imbue their image with medical expertise that makes them “legitimate” to prescribe standards of “healthy” behavior and to provide adequate solutions, in the first instance, in the well-being market. This form of legitimacy undoubtedly has a formidable commercial efficiency that no marketing discourse can claim to equal. But perhaps this trend should be seen in the context of an even greater change, that of the generalized social influence that the paradigm of quantification now exerts. Alain Desrosières made the distinction between

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measurement and quantification, which is particularly heuristic when analyzing the legitimacy of connected health. It deserves a long quote: “It is indeed necessary to distinguish two ideas, too often combined, that of quantification and that of measurement. The verb quantify is used here in a broad sense: to express and to embody in a digital form what previously was expressed in words and not in numbers. On the other hand, the idea of measurement, inspired by the traditional epistemology of the natural sciences, implies that something exists in a form already measurable according to a realistic metrology, like the height of the Eiffel Tower [...].The verb “to quantify”, in its active form (measuring quantity), supposes that a series of equivalence conventions is elaborated and clarified before expressing something through numbers. This involves comparisons, negotiations, compromises, translations, inscriptions, coding, codified and replicable procedures, and calculations. The actual measure comes next, as a settled implementation of these conventions. From this point of view, quantification breaks down into two instances: agreeing and measuring. The use of the word quantify draws attention to the socially and cognitively creative dimension of this activity. This not only provides a reflection of the world (usual point of view), but it transforms it, reconfiguring it differently.” [DES 09, pp. 10–11] Connected health is thus clearly part of a quantification process that presupposes the definition of new standards as well as their implementation in various measures. It is clear that in this area, the measurement is not based solely on “scientific standards” that define what and how to measure on the basis of previously constituted medical knowledge. Connected health devices broaden a particular form of quantitative “objectification” to realities that were not measured in the past because they were “qualitative” in nature (physical form, serenity, stress, “health capital”, etc.). The norms that make it possible to measure are less medical than sociopolitical: they come from the imaginary well-being, imbued with humanistic aspirations, political ideologies and, no doubt, market interests. Furthermore, like all social norms, those of connected health depend on the configuration of the society at a given moment. Thus, many applications

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systematically relate individual activity to collective activity resulting from the aggregation of individual data. But soon, the generalization of digital health practices will most probably overshadow the constructed and very relative nature of these norms. The ability of some actors to “detect” norms in the service of permanent quantification, once it becomes commonplace, may become a new source of legitimacy. Will it go so far as to impose itself on medical actors by “prescribing” the symptoms of the pathologies of tomorrow? 10.5. References [BEC 08] BECK U., La société du risque : sur la voie d’une autre modernité, Flammarion, Paris, 2008. [CAS 75] CASTORIADIS C., L’institution imaginaire de la société, Le Seuil, Paris, 1975. [CLA 10] CLAVIER V., MANES-GALLO M., MOUNIER E. et al., “Dynamiques interactionnelles et rapports à l’information dans les forums de discussion médicale”, in MILLERAND F., PROULX S., RUEFF J. (eds), Le Web Relationnel : Mutation de la communication ?, Presses Universitaires du Québec, Montreal, pp. 317–333, 2010. [CRU 15] CRUZ ZAPATA B., LUIS FERNÁNDEZ-ALEMÁN J., IDRI A. et al., “Empirical studies on usability of mHealth apps: a systematic literature review”, Journal of Medical Systems, vol. 39, no. 1, available at: https://doi.org/10.1007/s10916014-0182-2, 2015. [DES 09] DESROSIÈRES A., “L’argument statistique. Pour une sociologie historique de la quantification”, Revue d’anthropologie des connaissances, vol. 3, no. 2, pp. 359–365, 2009. [EHR 10] EHRENBERG A., La société du malaise, Odile Jacob, Paris, 2010. [EHR 11] EHRENBERG A., “La société du malaise. Une présentation pour un dialogue entre clinique et sociologie”, Adolescence, vol. 3, no. 77, pp. 553–570, 2011. [ELI 03] ELIAS N., La dynamique de l’Occident, Calmann-Lévy, Paris, 2003. [ELL 77] ELLUL J., Le système technicien, Calmann-Lévy, Paris, 1977. [FOU 94] FOUCAULT M., Histoire de la sexualité : La volonté de savoir, vol. 1, Gallimard, Paris, 1994.

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[HEI 58] HEIDEGGER M., “La question de la technique”, Essais et conférences, Gallimard, Paris, pp. 9–49, 1958. [ILL 06] ILLOUZ E., Les sentiments du capitalisme, Le Seuil, Paris, 2006. [MAR 14] MARQUIS N., Du bien-être au marché du malaise. La société du développement personnel, Presses universitaires de France, Paris, 2014. [MIÈ 07] MIÈGE B., La société conquise par la communication : Les TIC entre innovation technique et ancrage social, vol.3, Presses universitaires de Grenoble, Grenoble, 2007. [PAG 14] PAGANELLI C., CLAVIER V., “S’informer via des médias sociaux de santé: quelle place pour les experts?”, Les Temps des médias, vol. 2, no. 23, pp. 141– 143, 2014. [POS 16] POSTEL-VINAY G., “Santé et innovation”, Revue française des affaires sociales, vol. 1, no. 5, pp. 309–322, 2016. [STA 12] STAII A., “La fabrique sociale: autonomisation et légitimation dans le domaine de l’information de santé”, NETCOM – Réseaux, communication, territoires, vol. 26, nos 1–2, pp. 55–76, 2012. [STA 13] STAII A., “Health information in the public sphere: social and political Stakes”, StudiaInformaticaUniversalis, vol. 11, no. 3, pp. 97–107, 2013.

Data sources [COM 14] COMMISSION EUROPÉENNE, Green paper on eHealth commissioned by the European Commission, Brussels, available at: http://eur-lex.europa. eu/resource.html?uri=cellar:0de99b25-c0af-11e3-86f901aa75ed71a1.0002.01/ DOC_1&format=PDF, 2014. [COM 17] COMMISSION EUROPÉENNE, Attitudes towards the impact of digitization and automation on daily life, Survey commissioned by the European Commission, available at: https://ec.europa.eu/digital-single-market/en/news/ attitudes-towards-impact-digitisation-and-automation-daily-life, 2017. [CNI 14] COMMISSION NATIONALE INFORMATIQUE ET LIBERTÉS, “Le corps, nouvel objet connecté”, Cahiers Innovation & Perspectives, no. 2, available at: https:// linc.cnil.fr/sites/default/files/typo/document/CNIL_CAHIERS_IP2_WEB.pdf, 2014.

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[CNN 15] CONSEIL NATIONAL DU NUMÉRIQUE, La santé, bien commun de la société numérique. Construire le réseau du soin et du prendre soin, Report commissioned by the French Minister of Social Affairs, Health and Women’s Rights, Paris, available at: www.cnnumerique.fr/sante, 2014. [CNO 15] CONSEIL NATIONAL DU NUMÉRIQUE , Santé connecté. De la E-santé à la santé connectée, White paper, available at: https://www.conseil-national. medecin.fr/sites/default/files/medecins-sante-connectee.pdf, 2015. [CRE 15] CREDOC, Baromètre du numérique, Report, available at: https://www. arcep.fr/uploads/tx_gspublication/CREDOC-Rapport-enquete-diffusion-TICFrance_CGE-ARCEP_nov2015.pdf, 2015. [EWA 12] EWALD F., Assurance, prévention, prédiction…dans l’univers du Big Data, Report commissioned by the Institut Montparnasse, available at: http:// www.institut-montparnasse.fr/wp-content/files/Collection_recherches_n_4.pdf, 2012. [HAS 16] HAUTE AUTORITÉ DE SANTÉ, Référentiel de bonnes pratiques sur les applications et les objets connectés en santé (Mobile Health ou mHealth), Reference document, available at: www.has-sante.fr, 2016. [IPS 16] IPSOS, Labellisation & santé connectée, Paris, available at: https://www.ipsos.com/fr-fr/quels-enjeux-pour-les-francais-sur-une-labellisationdans-la-sante-connectee#, 2016. [OMS 11] ORGANISATION MONDIALE DE LA SANTÉ, M-health: new horizons for health through mobile technologies, Report, Geneva, available at: http:// www.who.int/goe/publications/goe_mhealth_web.pdf, 2011. [OMS 16a] ORGANISATION MONDIALE DE LA SANTÉ, Atlas of eHealth country profiles. The Use of eHealth in support of the universal health coverage, Report, Geneva, available at: http://www.euro.who.int/en/ehealth, 2016. [OMS 16b] ORGANISATION MONDIALE DE LA SANTÉ, Global Diffusion of eHealth: Making Universal Health Coverage Achievable, Report, Geneva, available at: http://www.euro.who.int/en/ehealth, 2016. [OMS 16c] ORGANISATION MONDIALE DE LA SANTÉ, From Innovation to ImpleDevelopment, eHealth in the WHO European Region, Report, Geneva, available at: http://www.euro.who.int/en/ehealth, 2016.

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[PRO 14] PROVÉANCE, Les Objets Connectés: Une Révolution Pour la Santé et la Prévoyance, White paper, Charenton-le-Pont, available at: http://www. proveance.com/livre-blanc-les-objets-connectes-une-revolution-pour-la-sante-etla-prevoyance/, 2014. [PWC 13] PRICEWATERHOUSE COOPERS, Socio-Economic Impact of mHealth: an Assessment Report for the European Union, Report, available at: https://ec. europa.eu/eip/ageing/library/socio-economic-impact-mhealth-assessment-reporteuropean-union_en, 2013. [PWC 14] PRICEWATERHOUSE COOPERS, Emerging m-Health: Paths for Growth, Report, available at: https://www.pwc.com/gx/en/healthcare/mhealth/assets/ pwc-emerging-mhealth-full.pdf, 2014. [RES 17] RESEARCH2GUIDANCE, Emerging mHealth App Economics 2017. Current Status and Future Trends in Mobile Health: How Digital Intruders are Taking Over the Healthcare Market, Report commissioned by Roche et Daman, Berlin, available at: https://research2guidance.com/product/mhealth-economics-2017current-status-and-future-trends-in-mobile-health, 2017. [TRU 15] TRUSTLAW, Patient Privacy in a Mobile World, a Framework to Address Privacy Law Issues in Mobile Health, Report made in collaboration with MHealthAlliance, Baker & McKenzie, Merck, Thompson Reuters Foundation, available at: https://www.trust.org/contentAsset/raw-data/03172beb-0f11-438e94be-e02978de3036/file, 2015. [VID 16] VIDAL, L’utilisation des Smartphones par les Médecins, Study in partnership with CNOM, available at: http://www.vidalfrance.com/wpcontent/download/info/Barometre_Mobile-VIDAL-CNOM-2016.pdf..., 2016. [VIG 93] VIGARELLO G., Le sain et le malsain. Santé et mieux-être depuis le Moyen-Âge, Le Seuil, Paris, 1993.

11 Expressions of Trust in the Home-Based Care Relationship and Areas of Legitimacy in the Context of Digital Media

11.1. Introduction Whether it is elderly patients or professionals working in the home, the deployment of digital uses for home care remains low despite French public policy efforts to fund programs such as TSN (Territoire de soins numériques) or those of the Silver Economy. Such a finding invites a comprehensive analysis of the information-communication practices between caregivers and patients. In this chapter, we propose a framework for analyzing what may appear to be tensions, even paradoxes, between the expectations and the experience of the care relationship and its mediatization. We will focus on the care relationship and support of people weakened by illness and made vulnerable by age. After a return to the subtleties between “curing” and “caring” which determine the care notion in France, as it was both constructed and experienced in contemporary societies, we will return to the notions of trust and legitimacy, describing how they are or how they could be called upon in the establishment of mediated communication spaces.

Chapter written by Géraldine GOULINET-FITÉ and Didier PAQUELIN. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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The first part of this chapter will propose a definitional approach to care, and this, using the specific of curative measures, care as a treatment aims to “cure”, and its associated care measures, care as attention, solicitude and consisting of “taking care” [ROT 12], in order to emit its information-communication expressions, the functions attributed to these two variations in the care relationship. We will address these two notions in the singular framework of communication between caregiver-relativehelper-home patient [GAG 00]. The second part of this chapter will return to the dynamics of building a relationship of trust within this triad. The trust expressed and built during and by the relationship is addressed as a vector of better living conditions in relation to a chronic illness suffered by the home-based patient. The third part will examine how the dimensions of care are expressed as an information-communication device before studying the effects of digital mediatization on trust in order to grasp the possible legitimacy. 11.2. Care: a relationship between actors Care is an act that is both technical and communicative between a caregiver and a patient. It is an act involving attention by which a third-party caregiver or a carer ensures the physiological and psychological well-being of a person. This therapeutic act targets the suffering body or the health of someone in the perspective of well-being. In the etymological sense, it is a state of mind and a concern for attending to someone or something: the term “care” comes from the medieval Latin sunnia which means “necessity, need, providing the necessary, giving or receiving hospitality” and the late Latin sonium meaning “worry, concern about an object, a situation, a project that is of interest”.1 Originally, care was defined as a relationship between two entities pursuing a purpose explicitly linked to the resolution of a situationproblem.

1 Centre national textuel et lexical (CNTL) [National Textual and Lexical Center].

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11.2.1. Structure of treatment: logics forged concerning epistemological foundations between cure and care This care relationship, defined as an informational and communicative act with a therapeutic aim, is historically inscribed in a philosophical thought imbued with a strong ethical dimension2; some, such as Socrates, considered care as the “caring of oneself ” and as a virtue universal fit for humans: “I see you, taking care of your body and your pleasures, your richness and your reputation, but do you take care of your soul?” (Apology of Socrates) Others, like Hippocrates, saw caring as the “caring of others” and assigned to it an enlightened competence, expertise attached to a knowingbeing, making of these aptitudes a science devolving to a specific social body, that of the priest-doctors3: “Healing sometimes for free, with the sole hope of gratitude and respect from others. [...] If an illness offers you the choice between several means of healing, always choose the simplest and the most practical to apply, it is the path that any enlightened man who does not try to impose it must take”. From the beginning, two logics seem to organize this relationship according to the semantic nuance assigned to it: one centered on the act of “curing” as postulate to the art of healing, nourishing the philosophical construction of medicine [LEF 06], and the other focused on attention, the “caring” as a postulate of a moral philosophy, a solicitude sometimes reflexive (taking care of oneself), sometimes transmissive (taking care of others).

2 From the Greek ethos meaning moral science, place of life; habit, morals; character, state of the soul, psychic disposition and the Latin words ethicus and mores which are about morality. 3 In Hippocratic reflection, the true physician was also a priest and philosopher according to the famous Galen’s formula, and his practice was articulated around three axes: logic, physics and ethics summarized in four main principles: Primun non-noncere (principle of non-maleficence), principle of autonomy (through the patient’s informed consent and confidentiality surrounding the medical act) and finally the principles of beneficence and justice based on equity and equality of treatment.

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Over the centuries, the construction of the care relationship experienced permanent oscillations between these two logics, “curing” and “caring”, whereby the suffering body and illness become the focus of attention and tension between a conception according to which the patient is the first object of care4 and then the subject of attention. 11.2.1.1. Curing: a design centered on the cure itself The activity of “curing” is primarily pragmatic, technical and normative. It (re)affirms, in practice, the caring function of medicine by defining it as a technical act, responding with the help of knowledge and skills specific to a particular need [LEF 14, p. 199]. In this context, “curing” presupposes application, meticulousness and concern in carrying out the act in order not to endanger the physical and psychological integrity of the other, but on the contrary, to support it, or even to restore it [PIR 06]. In this way, it tends to move closer to its Latin cura5 origin, making “care-concern” a worry centered on the healing of the sick through the search for diagnosis and appropriate treatments. The preponderance of the clinic in the training of doctors and since Hippocrates has justified over the centuries this curative approach to care, endorsed by university education and the biomedical model6 from which the hospital became the legitimate institution for “curing” [ROT 13]. In this approach, care first projected a functional utility in which the suffering body became the object of a mediation7 between the one who provided care and the one who received

4 This covers the anatomoclinic medicine field, then experimental medicine of the 19th and the first half of the 20th Century, corresponding not only to the objectification of the illness in its roots and its organic causes but also to the objectification of the body and the patient himself. 5 “Treatment of an illness, an injury, which leads to recovery. He undertook this cure. A difficult cure”, Littré dictionary. 6 Model derived from the medical application of the analytical method of the exact sciences, Swiss family and systemic research center website, available at: http//www.cerfasy.ch/courseonline/bio-methical-and-bio-psycho-social-modality, accessed on December 20, 2017. 7 Here, we mean mediation as “the act of bringing together, by a third-party called a mediator, two natural or legal persons called mediated, on the basis of rules and means freely accepted by them, for the purpose of preventing a dispute or its resolution of the establishment or reestablishment of a social relationship” [DEB 99, p. 11].

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it. “Curing” was then thought about and experienced as a communicative situation whose purpose was curative, the appeasement of evil by using technical means to consider the subject in a marginal way in his vulnerability beyond his patient figure. Long assigned to the only curative treatment of acute diseases, “curing” gradually became part of the 20th Century with its new time frames, passing from a punctual “cure” to a “sustainable cure” due in particular to the aging of the population and an increase in chronic illnesses. In this perspective, the “curing” clinic was aimed not only at targeting action at illness but also at the patient who must live with it, and then turning the treatment of the chronic illness into the new care laboratory [BAR 07]. These new configurations reshaped the concept of care-cure (to cure) toward a care-care approach (to care) and influenced the modes and content of care-patient communication, the latter being considered more as subjects, or even as actors. By borrowing from the English-speaking semantic field (to cure/to care), the variations of “care” for health French professionals are then justified according to three levels of understanding [ROT 13]: curing the acute illness, curing the chronic illness in time through treatment given and care as an act and feeling where the purpose is no longer curative but preventive or palliative. Three positions and aims differently define the aims and the modalities of the care relationship between caregivers, relative-helpers and patients. 11.2.1.2. Caring: a central conception of care By “caring”, the delimitation in the knowledge and skills between “professionals” and “laypersons” fades away, so that there are no boundaries between what belongs to the public, the institutional or the private sphere in this design of care [FUR 11]. “Caring” goes beyond the closed space of the intimate and singular dyadic sphere between the caregiver and the receiver, to engage a societal dynamic of concern, caring at particular moments, for which each, collectively, we must permanently remedy emergencies, failures, absences, pathologies [WOR 10]: “The time to care is also at the time of diagnosis [...] to reorient our techniques, our intentions, our attentions towards what we must cure, towards the objective problems, the subjective vulnerabilities, towards others” [WOR 11].

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The relationship is no longer solely based on the register of expertise mobilized to make decisions, but rather based on patient interaction, recognized as a subject beyond symptoms. The relationship is anchored in the epistemology of attention [LAN 16] in the service of oneself and others. Thus, “caring” in the sense of care becomes: “A generic activity that includes everything we do to maintain, perpetuate and repair our world, so that we can live there as well as possible” [FIS 91, p. 40]. Organized into four stages (caring about, taking care of, care giving and care receiving), care is part of a relationship that translates care work into an act (curing) and solicitude (caring). From an ethical perspective, care is more about the respect and promotion of the human person [DUR 94, p. 469]. Nourished by Canguilhem’s philosophical approaches to care [CAN 98], or Ricœur’s and Levinas’ ones [RIC 90a, RIC 90b, LEV 90], care is decentered from “curing” to consider it as essential in the understanding of the affected patient and affecting the caregiver in terms of vulnerability [ZIE 11] and how the illness fits into the life process. In everyday practice, “caring” is expressed in terms of relationships and communication through all the gestures and words attributed to people who are weakened or made dependent by illness, accidents or aging, so that these modes of interaction participate in maintaining the quality of life [COL 82] and support, and assist or accompany their ability to live independently or normally in terms of their vulnerability [GAG 00].

11.2.2. Interactional dimensions and functions of the care relationship This overview joins Mol’s words [MOL 09] who focused on looking at care according to two dimensions that organize the communication between

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the caregiver and the patient: the rationality of the caring relationship on the one hand, and the truth and the pertinence of this relationship on the other hand. 11.2.2.1. Rationality of the care relationship in a logic of choice When “curing someone”, the caring relationship is built around informational practices8 between the caregiver and the patient. In the context of treatment, interactions between the speakers take the form of significant but temporary encounters [FIS 96]. Curing practices seem to strengthen these interactions by accumulating interactions between individuals that last and which imply specific expectations, affects and representations: “It is not so much the formal framework of human encounters (duration, repetition ...) that makes it possible to distinguish interaction and relation but the cognitive and affective meanings that the interactants project in this interaction” [FOR 07, p. 34]. Brought back to “curing” in the context of aging and chronic illness, Mol differentiated the care relationship according to a logic of choice or a logic of care. The care relationship, when supported by a managerial logic of choice, engages the “curing” process in a linear time frame: informationdecision-action-result-evaluation. It is in a way the contract, the formalization, the formal agreement and the traceability. If the relational framework evolves according to the identity status granted to the patient as well as to the caregiver (see Table 11.1), the caring relationship builds its values on a more strategic communicative action [HAB 87], aiming at the efficacy or success in order to treat and/or heal.

8 Our choice was to consider the informational practices as proposed by Jean Meyriat [MEY 83], that is to say, as the emphasis of the action of the individual’s appropriation regarding information, a cognitive content of a communication realized or made possible, allowing us to act physically or intellectually since it brings forth knowledge that one needs to make a decision.

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Control

Autonomy Paternalistic Model “The doctor decides for the patient”

Informative “The doctor informs the patient and he decides”

Interpretative “The doctor presents the patient with his preferences and he decides”

Passivity: weakness, inability of the patient to make decisions for himself

Choice and control of medical care by the doctor

Selfunderstanding useful for medical care

Guardian, tutor

Technical expert

Advisor

Relational values

Conception of the patient’s autonomy Conception of the doctor’s role

Relationship

Logic of care

Deliberative “The doctor helps the patient to clarify their preferences so that the patient can decide” Moral selfdevelopment, selfdetermination useful for medical care

Friend or teacher

Relational distance Normative, technical rationality Relation on the subject: interaction principle Care is organized according to the caregiver’s technical competence for treatment purposes (illness)

Relational distance Intersubjectivity cognitive, emotions Relation to the human: relationship principle Care is organized according to the relationship between the carer/patient with a goal of providing support and care (illness)

cure Activity, passivity

curing Guided cooperation

curing Mutual participation

Logic of choice

Logic of choice Logic of care

care Attention concern Logic of care

Table 11.1. A comparison of the four models of the doctor-patient relationship proposed by Emanuel and Emanuel (1992) and the modeling proposal of relational reports according to Annemarie Mol’s care logic (2009)

11.2.2.2. Truth, accuracy and sincerity of the treatment relationship in a logic of care In the logic of “caring”, the relationship is based on enrolling patients in tenacity, adaptability and perseverance for treatment [MOL 10]. The

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communication framework that supports this logic is based on ethics of discussion forged on truth, accuracy and sincerity [PES 15] according to the theory of communicative action, which Paul Ricœur took up and based on hermeneutic phenomenology of the person. The caring relationship was considered from four strata: the speaking human (language), the acting/suffering human (action), the narrator (narrative) and the responsible human (ethics), based on the understanding of a person’s subjectivity, made possible thanks to self-esteem, which is not a self that is centered on itself but concerns self-esteem, a self with and for the other [PES 15, p. 117]. In this way, other components value “caring”, as taking into account emotional work through the management of emotions and feelings [HOC 03] or even the proxemics constituting the relational space [HAL 74]. 11.3. Dynamic of building trust in the home-based care relationship In a situation of physiological or psychological imbalance caused by a chronic pathology, it is important to understand how a climate and a relationship of trust are established between the elderly patient, the relativeshelpers and the caregivers. The context of home-based care is retained in this regard for the specific features it presents. Thus, this care is not limited to only curative techniques or the supervision of “curing” strictly for medical purposes. This type of care also aims to ensure a constant well-being on a daily basis, such as providing food, preparing a meal, identifying signs of discomfort, accompanying a consultation, negotiating treatment, finding the necessary resources to buy medicine or preparing a home remedy, maintaining a familial and neighborhood network, protecting or treating using religious rituals, assisting a family member with a severe disability, reassuring a sick parent, etc. [SAI 91]. The concept of trust first leads to considering the act of “trusting”, that is to say, “relying” on someone else [RIC 00]; moreover, when care takes place in the closed and intimate space of the home, one opens this “home” to the other. Taking up Winnicott’s words, Lehmann [LEH 05, WIN 86] recalled the importance of reliability in the care relationship. For these authors, reliability should act as a form of protection against the unpredictable, against the unknown generated by a pathology. Trust becomes one of the foundations of the interpersonal relationship beyond the technical, medical

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or the mere presence of a third party to the patient. Marzano [MAR 10, p. 53] recalled that “the verb to confide (from the Latin confidere: cum, “with” and fidere “proud”) means, in effect, that something precious is given to someone, trusting them and thus abandoning oneself to their benevolence and good faith. The word’s etymology also displays the close links that exist between trust, faith, fidelity, confidence, respect and belief”. If the main marker that legitimizes this trust is the dependence and vulnerability of one individual compared to another, the care relationship sometimes oscillates between secure and interpersonal trust forged on abilities and skills, and sometimes it is affective-relational [PHA 02], grounded in intentions and feelings, due to an imbalanced power relationship between actors [RIN 94]. This is largely due to the way in which caregivers engage with others to manage the uncertainty created by illness (see Figure 11.1) modeled in the theories of interpersonal attachment [BOW 69, WIN 86].

Figure 11.1. A modeling proposal for the zone of confidence from typologies of attachment and representation of the self by Bartholomew and Horowitz (1991). For a color version of the figure, see http://www.iste.co.uk/paganelli/confidence.zip

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Thus, they relate trust to the nature of self-constructions (secure, preoccupied, detached or fearful) and the construction of representations of the self and others.9 By attaching confidence to the concept of self-esteem, that is to say, to the value given to the self [JAM 83], the internal security experienced toward oneself builds trust in the other from three essential components of the self: behavioral, cognitive and emotional [AND 05]. In the elderly, weakened by chronic illness, the value of the self varies greatly according to the context (cognitive, psychomotor, relational), leading to trust, either to a task involving delegation of their own fragility to the other (low levels of self-confidence) or to the expression of self-determination to maintain one’s well-being and autonomy (strong self-confidence) [ALA 08]. This implies, according to Tisseron, the implementation of a shared intimacy as the foundation of self-esteem [TIS 11, p. 85], allowing selfconfirmation in the eyes of others. Thus, trust in the care relationship is considered beyond the specific and unique conditions of a meeting between oneself and others, but also between what one decides to share or not to share about oneself with the other. From the sharing of privacy to the sharing of a private home life, trust in the care relationship is established from a physical and intersubjective proximity, contributing to the development of an alliance by creating warmer ties, resulting in a better understanding of the person’s life history, which is more visible at home [CRE 10, p. 184]. Consequently, the dynamics of trust are found, according to the categories of actors stepping in to care at home, and consider privacy, esteem and proximity as the relational structure constitutive to “curing” and “caring”. Three dimensions are the subject of the following development and will be mobilized in order to understand in what way and how the passage of a proxemics inscribed in a physical space to an at-spatial proximity questions the effects of relationship mediatization in regard to care.

9 The reference to the classification of [BAR 91], which is organized around the four main attachment styles developed by Mary Ainsworth [AIN 78] and Main and Solomon [MAI 90]: secure (or assured), detached (or avoidant), anxious (or ambivalent), disorganized (or disoriented), allowed the authors to value the way in which coping is practiced (mode of adjustment to stress) and to explain how health professionals have modeled this approach in their care practices to explore the connection between a subject’s attachment style and his response to illness or pain.

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11.3.1. Trust in the doctor-patient relationship: a notion rooted in privacy Confidence in the doctor-patient relationship finds expression in the notion of a singular symposium as formalized by Duhamel [DUH 44, p. 13]. It is based on the idea that the care-concern leads to a particular and unique encounter between two singular individuals (the doctor and the patient), making this value the conceptual and effective framework of all the relational exchanges between the carer and the person being cared for. A private place, the singular discussion is inherited from Hippocrates, the philosophical thought to be translated in the code of medical ethics,10 by the expression of secret confidences between the doctor and his patient: “There is no medicine without trust, trust without confidence and no confidence without secrecy” [POR 64]. 11.3.2. Trust in the caregiver-patient relationship: a pattern shaped by esteem For the nursing professional, trust is structured in the area of relational care whose function is to mediate the “cure” of “care”, summarized in the Dictionnaire des concepts en soins infirmiers (3rd edition, 2016) in the following terms: “Relational care is defined as a verbal or nonverbal intervention aimed at establishing communication to provide help and psychological support to an individual or group”.

10 According to the tradition of Western medical ethics, directly inspired by the oath of allegiance attributed to Hippocrates (Hippocratic Oath), the doctor is obliged to keep secret what he learns when exercising his profession, out of respect for the trust shown by a person in a fragile state. This is reflected in Article 4 of the 1995 French Code of Medical Ethics: “Professional secrecy, instituted in the interest of patients, is imposed on every doctor under the conditions established by law. Secrecy covers everything that has come to the knowledge of the doctor during his career, that is to say, not only what has been entrusted to him, but also what he has seen, heard or understood”.

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Trust is built on an alliance between the caregiver and the person being cared for when developing coping strategies11 in order to manage illness. It is from respect (of oneself, of the other) that the nursing exercise12 can be instituted at each stage of the nursing process (nursing diagnosis-care planimplementation-evaluation): “The nurse needs to have a certain level of self-confidence to deal with different types of clients, to create a meaningful relationship with them, to express them, to teach them and to help them move towards a better level of well-being” [PHA 11]. 11.3.3. Trust in the helping-patient relationship: a domestic commitment of proximity Assistance, support and care by any person acting as caregivers or relatives-helpers become acts of mutual trust and solidarity in order to maintain well-being and the physical, material and socio-emotional independence of people on a daily basis. Thus, the measures of trust toward professional caregivers are that they are primarily centered on a rational trust because of the activities related to the helping nature of the relationship (help with showering, doing the groceries, meals, days out, etc.) while that of relatives-helpers (family or informal) are formalized more in the form of relational trust, legally legitimized by the recognition of a “trusted person” and the subject of studies in proximology13 [JOU 10a and b]. In this case, the alliance established does not only apply to the relationship between the patient and the caregiver but also aims at establishing a relational proximity between the patient and his caregiver and between the carer and the health professionals. 11 A combination of cognitive and behavioral efforts to control, reduce or tolerate specific internal or external demands experienced by the subject as threatening, exhausting or exceeding his or her resources [LAZ 78]. 12 For [BAL 03], the nursing exercise is part of an educational approach whose main goals are to preserve, maintain and develop the person being cared for the capacity to live/to develop the skills of the person being cared for/to support the skills of the people being cared for. 13 The term proximology is a neologism, from the Latin proximus (“near”) and Greek λόγος: lógos (“speech, discourse”). This research field examines the exceptional relationship between the sick or the dependent person and their loved ones, whether it is the spouse, family members or friends. In its originality, it considers the presence and the role of the family circle as decisive elements in regard to the patient’s environment, thus also including the effectiveness of care and its management.

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From this analysis, the proposal for a triangle of trust is based on the recognition of the caregiver’s psychosocial skills involved in patient care and the skills of health professionals (see Figure 11.2).

Figure 11.2. A triangle of trust between a patient, a caregiver and health professionals. For a color version of the figure, see http://www.iste.co.uk/paganelli/confidence.zip

This analysis characterizing the role and functions of trust in home care is particularly proven in the context of chronic illness and old age, where vulnerability meets physical, cognitive and social fragilities. This is why our proposal for modeling trust (see Table 11.2) is inspired by the idea of reliance as the inseparability between trust, relationship and care [PHA 02] made possible by two determinants of the relational process: attitude and behavior on the one hand and the information delivered on the other hand. Likewise, it joins Chaulet’s work [CHA 07, p. 23], which, in a sociological approach, highlights the dynamics of trust as a “pathway” whose trajectory can range from “confident” trust based on knowing or predicting the actions of others to “decided” trust necessary to maintain an interaction in the absence of knowledge. As trust becomes routine and is based on habit and stable knowledge of the other, it tends to evolve, gradually moving from the status of decisive trust to assured confidence, and the relationship may possibly experience pivotal moments where assured confidence is tested according to whether the actor decides to continue to grant it to the other.

Expressions of Trust in the Home-Based Care Relationship

Nature of the caregiver Reliance Type of trust spaces Participant at home

City doctor

Nurse

Professional caregiver (life assistant, etc.)

Family caregiver (relative)

INTIMATE Confidence, secret Treatment

ESTEEM Affectivity Relational Care

DOMESTIC Functional, material

DOMESTIC Affective, Emotional

Doctor to nurse INTIMATE Doctor to relative ESTEEM Nurse to relative ESTEEM Nurse to caregiver INTIMATE Relative to relative INTIMATE Relative caregiver to relative helping doctor INTIMATE Relative caregiver to nurse ESTEEM

Function Communication of trust in framework care logic of the care relationship Curingcure or the careSingular curing conference Rational trust

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Purpose Responsibility

Safety of treatment

Cure or curing Right distance Relational trust

Support Accompaniment during illness

Caring Rational trust

Human services for everyday help

Help relationship

Caring Relational Proximology Trust

Coordination of care interventions Decision support Help with care

Table 11.2. A proposal for modeling typologies and functions of trust according to the care actors in the home

This reading grid joins the reasoning of a fundamentally interactionist character of communication in the care relationship, made possible thanks to the intersubjective settings that it generates, and which favors interactional synchronism [COS 93, p. 18]. The practice of “caring” fully fits into this search for a patient-oriented interactional synchronism, seeking to establish a climate of relational trust translated into gestures, words and deeds.

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Previous analyses have retained a variety of interactional situations between a caregiver, a relative-helper and a patient. Depending on whether they find themselves “curing” or “caring”, they organize unique acts of information and communication. In this third part, we propose an exploratory analysis of the potential use of the mediatization device of communication between care actors and patients. 11.4. Digital mediatization of the relationship based on the care device In the context of a face-to-face communication, the “caring” relationship is translated into care situations through three types of communicative acts: the gesture (taking a blood test, performing auscultation, helping to clean the person, etc.), the attitude (listening, showing empathy, respect, interest, commitment, etc.) and discourse (clarity of language, level of comprehension, answers to questions, etc.) and whose proxemic framework regulates just “relational distance”. Furstenberg [FUR 11] considered this as the conjugation of eight elements of solicitude: warmth, ability to listen, availability, simplicity, humility, authenticity, humor and compassion. The advent of e-health as the use of information and communication technologies [EYS 01] brings together three main fields of application: telemedicine,14 telehealth15 and m-health.16

14 Telemedicine is a form of remote medical practice that connects one or more health professionals. Communication can take place between the professionals or with patients and among those who are necessarily a medical professional. Website of the French Ministry of Solidarity and Health, available at: http//solidarites-sante.gouv.fr /care-and-diseases/specialcare/telemedecine/article/la-telemedecine, accessed on December 20, 2017. 15 Telehealth is the use of tools for the production, transmission, management and sharing of digital information for the benefit of both medical and medico-social practices. Labordes Report, 2009, p. 37, available at: http//www.ladocumentationfrancaise. fr/var/storage/public-reports/094000539.pdf, accessed on December 20, 2017. 16 M-health brings together all the services available via smartphones, tablets and connected objects. The United Nations Foundation issued a ranking according to six categories of applications: 1. Education and awareness. 2. Remote assistance. 3. Diagnosis and supportive treatment. 4. Communication and training for health professionals. 5. Illness and follow-up of an epidemic. 6. Monitoring and remote data collection.

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The integration of digital devices in the care relationship leads to a double questioning related to the media coverage of this mediation, on the one hand on the way in which the care device is structured through the three bodies that make up this communication (semiotics, the social and the technical), and on the other hand, on the effects of this mediatization when establishing relationships of trust aimed at “caring”. The studies conducted in this area attest to the efficiency of the use of e-health on certain dimensions such as the transformation of health behaviors [PER 16], or the impact on social inequalities in health [BEN 12]. Working on “caring” as a communicative act is rarer. This need for knowledge calls for the development of an analytical framework inspired by the work carried out on the use of mediated communication devices. Three dimensions are retained for a comprehensive analysis of the mediatization of the care relationship: the mediatization of the care relationship with ICTs, the mediatization of the “caring” relationship and the establishment of a climate of trust in a context of media coverage of care practices. 11.4.1. Singularity of media coverage of the relationship with ICT Unlike using computers as simple business software, e-health applications have especially reconfigured the information and communication processes of the care relationship as they connect, via the Internet, a multitude of actors and offer exchange and sharing spaces between them. Inspired by Wagner’s work on the Chronic Care Model [WAG 01] due to the aging population and the prevalence of chronic illnesses, Gee and Al [GEE 15] have proposed adapting this model to e-health. Let’s return to some of the major technical and social transformations in the care relationship. At the technical level, several reconfigurations are noted in the digital mediatization of the e-health care relationship. With a synchronous conception, punctuated by temporalities linked to the medical consultation time between the doctor and the patient, the modalities of exchanges can be applied in asynchronous, permanent and continual ways due to the follow-up of the chronic illnesses, with new spatial configurations (home-hospital).

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As a result, information transmitted under the seal of medical confidentiality becomes shared between information systems and a plurality of professionals. At the social level, this reconfiguration by Cassilli [CAS 09, CAS 11] with reference to Eysenbach called “apomediation” or “disintermediation” identifies the third digital as a communicative actor involved in the care relationship, leading the doctor to no longer be the only expert but one actor among others within the new sociabilities that the Internet provides. In fact, while medical informatics mainly responded to either organizational, technoeconomic (or technocentric) or medico-integrative (or anthropocentric) logic [GRO 07], the arrival of Web 2.0 and digital social networks favored the emergence of innovative patient roles. Thus, the study conducted by Tjora [TJO 14] at the Norwegian University of Science and Technology identifies three types of relationships mobilized in e-health: – a relation of objectification in which the medical data becomes a platform of clinical communication; – an activation relationship where patients are users of professional information services; – a committing relationship in which they are involved in clinical research and communication. 11.4.2. Singularity of media coverage of care with ICT Considering care as a dimension that is individual, collective and institutional, we think of it, in the context of digital mediatization, as an information or an infosphere system, reconciling an “info-signal” and an “info-signification”. Far from being reduced to functions of functional interactions, the care infosphere would allow an “intentional” interactivity, characterized by the reconstruction of a situation of interlocution between authors (here, the triad patient-helper-caregivers) physically absent but nevertheless present by the imprint, and they leave behind the trace of any mediated information [PER 99, p. 156].

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In this way, care should be a device, promoting information and knowledge that, in the context of e-health, is reflected in terms of dissemination and sharing to allow “curing to take place”. Three dimensions of care are conducive to digital media coverage, because of the communicative acts attached to it: support, help and care. As such, the recent work conducted in the Netherlands by Jong et al. [JON 16] on the sharing of an online primary care plan for elderly people followed at home for managing a chronic pathology emphasizes that the establishment of a multidisciplinary coordination process via a digital informationcommunication device17 contributes to a “caring approach” through its integrative and shared approach to caring for the person. 11.4.3. Trust climate in the context of digital media In the context of digital mediatization, the physical identity of care actors, in the four phases proposed above by Tronto, is the result of an encoding process, a semiotization that is both genetic and social [PIE 11] and that can vary the “trust pathway” from an ensured rationality to a relational and decided trust. This is why the central e-health approach to “ethical” legitimization relies particularly on the conditions of security and the protection of health data. The first thing to understand is the legitimacy of e-health uses by users. The studies conducted on digital trust in health18 show that the trust criteria differ according to the categories of authors and vary according to the scope of e-health. According to several opinion polls,19 telemedicine should enjoy the highest level of confidence, due to the legislative framework surrounding its conditions of practice. However, the association of this informationcommunication practice with the act of practicing medicine raises different levels of appreciation depending on the type of trust encountered. Indeed, although rational confidence is recorded in confidentiality and data processing, the relational trust remains measured, favoring the presence of the practitioner to treat serious pathologies or to address a topic of intimate or sensitive health. 17 Congredi website, www.congredi.org, accessed on December 22, 2017. 18 “Confiance et santé numérique: impact sur les applications de m-santé”, Caisse des Dépôts et Consignations Report, 2017, available at: http//telecom.sia-partners.com/sites/default/files/ note_de_synthese_confiance_et_sante_numerique_2_0.pdf, accessed on December 22, 2017. 19 Médiaprism (2012), Santé Numérique (2014), Harris Interactive (2017).

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This distancing of the digital third in the doctor-patient relationship, however, contradicts the increased need for surveillance by patients and caregivers. It is in m-health (mobile health) that this legitimacy seems to find its place. The report on digital trust in health20 offers a fairly complete picture of the variations granted to it according to the various players in the health market (see Figure 11.3).

Figure 11.3. The most important confidence criteria in the eyes of the different health actors (source: Analysis Sia Partners December 2016 to February 2017). For a color version of the figure, see http://www.iste.co.uk/paganelli/confidence.zip

20 “Confiance et santé numérique: impact sur les applications de m-santé”, op. cit.

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The results on the trust index conducted by Numérique & Santé21 complement the concept of a user-differentiated usage value. With a two- to five-year forecast, the study highlights the differences in trust design among users. At home, the integration of digital devices aimed at surveillance (fall prevention, etc.) or compliance (glycemic control, asthma, etc.) follows a paradoxical trend: while health professionals see its use as an opportunity for a continuous and diligent therapeutic monitoring for better compliance (treatment, prevention, etc.), users, especially when they are old, remain wary and resistant. Caradec [CAR 99] showed that elderly people only accept technologies that are intended for them if they can give their use meaning; that is to say, if these technologies make sense in relation to their identity, their history and their social and personal practices. These results are consistent with Davis and Venkatesh’s work on technology acceptance [VEN 00]. These authors recalled the importance of developing a sense of utility of the proposed service, which is related to internal and external variables. Among these external variables, device acceptance also involves the social and family environment where parents, friends and caregivers act as mediators who support the behavior of adhesion or rejection of the system using their feedback to the system [OTJ 10]. The multiplication of multifactorial risks related to chronic illnesses and the desire to stay at home legitimize this significant use among elderly people and their caregivers. Indeed, the level of utility for this type of mediated communication increases when these devices mobilize a joint use between the patient and the caregiver.22 11.5. Forecast and conclusion Noting that, to date, there has been no experience of the joint use of an information-communication device between elderly patients, caregivers and relatives-helpers, focusing on the help, support and care functions inherent in “caring” at home, we propose studying the care device from the angle of the 21 Six indicators were evaluated by the study: infrastructure, production and coordination of care, telemedicine, e-health in the home, social media in health, creation of economic and industrial value, conducted on the basis of a self-administered survey on the Web, with a panel of health actors and e-health experts. 22 Perception et utilisation des objets connectés par les seniors, survey conducted by the French Institute of Seniors, between March 9 and 28, 2016, available at: http//blog-frenchiot.laposte.fr/seniors-seduces-liot-sante, accessed on December 22, 2017.

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ethical modeling of the information system in the doctor-patient relationship proposed by Béranger [BÉR 12]. The objective of this approach was to reconsider care, beyond its axiological, deontological and teleological functions, as an informationcommunication device, structuring the relationship of care between the social actors in a remote asynchronous co-presence situation. While the approach to curing seems familiar in its history, with the intervention of technical objects like the technological third, what Coeckelbergh expressed via the affirmation that “technology has always mediated care practices” [COE 15], the digital at the care level that is taken into account would appear, a priori, more distant from these concerns, considering the attention required in viewing help, support and care as values centered exclusively on human relationships between the actors. The challenge of current and future research is to analyze the processes that support the emergence and development of a mediated care practice. One of the aims pursued is to identify and characterize, in the co-use of sociotechnical information and mediated communication devices, the factors constituting the construction of a territory of common and shared actions between different actors favoring the emergence of a practical community between those who receive care and those who provide it. By focusing the object of study on support, help and care functions, the central hypothesis suggests that the digital mediatization of care contributes to constructing the common space of shared trust between the elderly patient, relative-helper and caregivers in which esteem, privacy and proximity of the care relationship can be exercised through the information-communication practices mobilized. The particular context of patients over 65 years old and suffering from a chronic pathology leads to the mobilization of the concept of capability as defined by Sen [SEN 79]. It is important to identify the components of what would be an enabling environment [FAL 13], one that promotes well-being, or at least the betterbeing, and maintenance of the elderly patient’s independence.

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[JOU 10b] JOUBLIN H., “Genèse de la proximologie”, in JOUBLIN H. (ed.), Le proche de la personne malade dans l’univers des soins : Enjeux éthiques de proximologie, Éditions Érès, Toulouse, pp. 269–301, 2010. [LAN 16] LANCELLE A., “L’éthique médicale, l’éthique des médecins“, Implications Philosophiques, available at: http://www.implications-philosophiques.org/ethiqueet-politique/ethique/lethique-medicale-lethique-des-medecins/, 2016. [LAZ 78] LAZARUS R.S., LAUNIER R., “Stress-related transactions between person and environment”, in PERVIN L.A., LEWIS M. (eds), Perspectives in Interactional Psychology, pp. 287–327, Springer, Boston, 1978. [LEF 06] LEFÈVE C., “La philosophie du soin”, La Matière et l’esprit, vol. 4, pp. 25– 34, 2006. [LEF 14] LEFÈVE C., “De la philosophie de la médecine de Georges Canguilhem à la philosophie du soin medical”, Revue de métaphysique et de morale, no. 2, pp. 197–221, 2014. [LEH 05] LEHMANN J.-P., “Ce que ‘prendre soin’ peut signifier”, Le Coq-Héron, no. 1, pp. 50–54, 2005. [LEV 90] LEVINAS E., Autrement qu’être ou au-delà de l’essence, Hachette, Paris, 1990. [LOU 12] LOURENÇO C., PEREIRA C., FONSECA C. et al., “La confiance dans la relation de soins”, Perspective Soignante, vol. 44, pp. 133–142, 2012. [MAI 90] MAIN M., SOLOMON, J., “Procedures for identifying infants as disorganized/ disoriented during the Ainsworth Strange Situation”, Attachment in the Preschool Years: Theory, Research, and Intervention, vol. 1, pp. 121–160, 1990. [MAR 10] MARZANO M., “Qu’est-ce que la confiance?”, Études, vol. 412, no. 1, 2010. [MEY 83] MEYRIAT J., “De la science de l’information aux métiers de l’information”, Schéma et Schématisation, no. 19, pp. 65–74, 1983. [MOL 09] MOL A. et al., Ce que soigner veut dire : repenser le libre choix du patient, Presses des mines, Paris, 2009. [MOL 10] MOL A., POLS J., MOSER I., Care in Practice: On Tinkering in Clinics, Home and Farms, Transcript-Verlag, Bielefeld, 2010. [ODE 16] ODEH S., “Du dossier médical personnel au dossier partagé”, Les Cahiers du numérique, vol. 12, no. 1, pp. 31–50, 2016.

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[ROT 12] ROTHIER BAUTZER E., Entre cure et care : les enjeux de la professionnalisation infirmière, Éditions Lamarre, Rueil-Malmaison, 2012. [ROT 13] ROTHIER BAUTZER E., Le care négligé : Les professions de santé face au malade chronique, De Boeck-Estem, Brussels, 2013. [SAI 91] SAILLANT F., “Les soins en péril : entre la nécessité et l’exclusion”, Recherches féministes, vol. 4, no. 1, pp. 11–29, 1991. [SEN 79] SEN A., “Equality of what? The Tanner Lectures on Human Value”, University of Utah Press, Salt Lake City, pp. 195–220, 1979. [TIS 11] TISSERON S., “Intimité et extimité”, Communications, no. 1, pp. 83–91, 2011. [TJO 14] TJORA A., “Digital patients: a typology of emerging patient roles”, PAHI, pp. 135–144, 2014. [TRO 08] TRONTO J.C., “Du care”, Revue du MAUSS, no. 2, pp. 243–265, 2008. [VOI 34] VOIVENEL P., DUHAMEL G., Le Médecin devant la douleur et devant la mort, Librairie des Champs-Élysées, Paris, 1934. [VEN 00] VENKATESH V., DAVIS F.D., “A theoretical extension of the technology acceptance model: Four longitudinal field studies”, Management science, vol. 46, no. 2, pp. 186–204, 2000. [WAG 01] WAGNER E.H., AUSTIN B.T., DAVIS C. et al., “Improving chronic illness care: translating evidence into action”, Health affairs, vol. 20, no. 6, pp. 64–78, 2001. [WIN 86] WINNICOTT D.W., “The theory of the parent-infant relationship”, Essential papers on object relations, pp. 233–25, 1986. [WOR 10] WORMS F., Le moment du soin : à quoi tenons-nous?, Presses universitaires de France, Paris, 2010. [WOR 11] WORMS F., “Frédéric Worms - Le moment du soin, à quoi tenonsnous?”, Librairie Mollat – Bordeaux (Youtube Channel), Video, available at: https://www.youtube.com/watch?v=rRmzvAOawqw, 2011. [ZIE 11] ZIELINSKI A., “La vulnérabilité dans la relation de soin”, Cahiers philosophiques, no. 2, pp. 89–106, 2011.

12 The Electronic Medical Record: Standardization Issues and Personalization of Information for Health Professionals

12.1. Introduction to EMRs Implementing electronic medical records (EMRs) in hospitals accompanies the evolution of hospital practices. This is characterized first and foremost by the increased need for traceability of actions and decisions associated with patient management [ROM 04], and then by an increased need for coordination between specialties, due to hyper-specialization, and between different professions, due to a greater multidisciplinarity of teams [PAS 03]. While the implementation and use of EMRs can prevent duplication and related errors as well as optimize care management by facilitating the availability of medical information [POB 14, SLI 17], recent literature shows that the implementation of EMRs in hospitals remains particularly complex, resulting in mixed use [BOO 14, CRE 13, GAG 12]. Effects contrary to those expected are highlighted, including an increase in the time devoted to prescription, as well as prescription errors [HAN 05, KOP 05, KOP 08, NEB 05] or the emergence of workaround practices [PAR 12, SAL 11].

Chapter written by David MORQUIN and Roxana OLOGEANU-TADDEI. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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The inadequacy of EMRs in clinical processes, characterized by heterogeneity and a need for personalization that is difficult to reconcile with standardized processes, appears to be one of the main explanations for this finding [BOO 14, CRE 13, GAG 12, LUD 09]. As summarized by Ash and Sitting, “with computers, you have to think in black and white and the patients are in the gray” [ASH 07]. Add to this the fact that the “gray” is defined in a different way according to the actors and the specialties. To understand this perceived inadequacy, it is necessary to distinguish the processes associated with the diagnosis or therapeutic management of a patient and the more transversal processes, common to the care of all patients in a department, or even the entire hospital. This involves the process of making appointments, the process of monitoring, validating and sending medical reports, the drug process (ranging from prescription to inventory management), the laboratory consultation process or imaging results, recording medical images or prescriptions [PAS 00]. The use of a single piece of software, ensuring all these features, reduces the variability of these common transversal processes and induces a homogenization of practices. The common point between the transversal information processes, tending towards standardization, and the clinical processes, tending towards the management of the singular case for diagnostic and therapeutic activities, is to rely on the information contained in the EMR. The uniqueness of the medium increases the actors’ interdependency: it is both informational (for example, to administer a drug, the nurse must be able to read the computerized prescription, to understand an allergy, the physician has to be able to access all the treatments provided for a patient during the care process in the hospital); and sequential (some tasks can only be performed by a group of actors when another group has validated a step in the software: for example, according to the hospitals, the doctor can prescribe a drug only if the patient’s stay was created and the admission confirmed). Thus, EMRs can be understood as an information system, namely the information circuit comprising several steps: capturing, storing, processing and transmitting information for organizational purposes (in this case information associated with patient management) [REI 11].

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While there is abundant literature in the information systems field concerning the role of technology in the standardization of work processes in enterprises, especially in the logistics sector, empirical data on the characteristics of the organization of information contained in the EMR and its consequences for unstandardizable diagnostic and therapeutic processes are few. We will show in this chapter that the permanent arbitration between standardization and personalization of information is one of the main issues in the use of EMRs. Indeed, because of the diversity of contexts, according to the objectives and practices of the different clinical sectors, it is difficult to find a common rule to define the clinical information and its organization in EMRs. To support this research proposal, we will present an exploratory study based first of all on the analysis of open responses to a questionnaire administered to medical and paramedical personnel at the end of the implementation of an EMR in a French university hospital (the Alpha Hospital), then on data from the observation of the actions implemented to improve EMR readability in the three years that followed, including the improvement of the information architecture. In the first part of this chapter, we will present the state of the art of the literature on the organization of medical information in EMR and on the flexibility necessary for its personalization. In the second part, we will present the empirical study. The third part will discuss the difficulties in organizing the information contained in the EMR with regard to the very large number of actors and their diversity. We will show that the permanent arbitration between standardization and customization leads to the quality of the information captured, stored, processed and transmitted in the EMR. 12.2. Literature review Studies have presented the specificity of an information system for physicians. Thus, to develop a diagnosis, a physician reconstructs a contextual representation of the data from the patient’s examination and the story of his or her illness [HIG 08]. He or she integrates in a paper or computerized document, called “medical observation”, the sequence of events and patient symptoms, clinical signs and laboratory tests. He or she then prioritizes the information needed, which is relevant information from his or her point of view for medical decision-making and seeks advice from

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his or her peers if necessary [HIG 08]. Although writing observations is part of medical routine, the way of writing them is often specific to each specialty and even to each physician [NOR 05]. The true organization of these elements is at the heart of medical reasoning. When making decisions, the doctor must write his or her prescriptions (drugs and other treatments, complementary examinations) known to the various actors who will provide them. He or she can adapt the treatment if he or she has in return relevant information on the consequences of his or her decisions, on the results of examinations or the evolution of the clinical situation, integrating, for example, drug side effects or the evolution of clinical signs [HIG 08]. Thus, the medical decision process related to a patient makes it possible to acquire and store useful medical information for a given patient, to organize and process it, and also to disseminate it. This information system can be thought of not only at the level of a doctor who uses the patient’s file to manage a clinical situation, but also at the collective level since several individuals use the same file (different specialists, paramedics, secretaries). The implementation of an EMR profoundly transforms the practices and organization of work. Many adjustments are necessary and, they continue after the implementation of the software [SHA 03, TYR 94]. These adjustments and actions of contextualization concern both the redefinition of rules and procedures and the adaptation of technology to the work context [ORL 95]. In hospitals, standardization induced by EMRs (with common interfaces and architecture) opposes certain characteristics of hospital work, including unpredictability, uncertainty about process flow, high variability and the need to constantly adapt to new situations [BJØ 09]. Bjorn et al. stated that “Designing one single electronic template to be used in multiple contexts embeds the challenge of balancing between standardization – the process of striving for one single template – and configuration – the process of customizing the template to support local work practices” [BJØ 09]. The personalization process mentioned is particularly complex because the diversity of objectives must be taken into account (structuring of the data for clinical activity, possibly taking into account research, teaching and data entry by students), and also because of the diversity and variability of processes [PAS 03], and the professional autonomy of physicians who, according to their expertise, may choose to work around a protocol or a prescribed process [BOO 09]. In general, a great deal of flexibility is required to adapt and customize the

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EMR according to users’ needs, namely health professionals in different clinical sectors [BOO 14]. These work processes integrate informational processes as each physician and each department or clinical process may capture, process and transform information to make medical decisions. The high diversity of the hospital’s activities is due to the multiplicity of compartmentalized departments (clinical, medical, logistical and administrative departments) and the fragmentation of medical knowledge and over-specialization. In addition to the historically dominant medical structure, new professional groups (physiotherapists, occupational therapists, psychologists, manipulators-radiologists, social workers, dieticians, health managers, etc.) have made both the inter-professional hierarchy and the work of health care professionals more complex. The conflicting balance between groups makes it possible to stabilize the system by defining the prerogatives of each and impacts the diffusion of an innovation [FER 05]. For example, the medical group struggles to preserve the unpredictable characteristics of the activity for which it is responsible: it opposes the rationalization of its own sector, as well as fighting against that of others [DEN 99]. However, the positioning of the medical group is decisive in the use of EMR by other actors [VEN 11]. Thus, the entering of information was rather considered by the doctors as a task of low added value, often delegated to paramedical personnel during implementation [KAN 11, LLU 11]. The use of information technologies can then be an issue of professionalization, allowing nurses to increase their sphere of influence [SCH 06] or, on the contrary, to reduce it, for example, by the formalization of prescriptions, which reduced the nurse’s subtle influence in clarifying or interpreting the prescription. The different specialties can have divergent objectives for the EMR configuration, as a recent study shows by taking the example of a very marked conflict between surgeons, pharmacists and nurses around the level of prescription formalization in a piece of software that surgeons asked the administration to withdraw [RIV 11]. In addition, the Information Systems Department (ISD) may, for resources or maintenance reasons, not wish to carry out specific development, “customization” for a medical team, and even less for an individual [GUI 12]. For example, the development required for the needs of

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just the specialty of neurology in a hospital center in Denmark came to more than 10,000 screens [BER 01]. This limitless customization has led to management and maintenance difficulties by the ISD. 12.3. Exploratory empirical study 12.3.1. Study context The EMR was implemented in 2012 at Alpha French University Hospital, which has a capacity of more than 2,500 beds, according to a top-down approach, that is to say on the orders of the general management. The EMR includes the following modules: medical prescriptions, nursing files, medical files, office equipment, editing of records and discharge summaries (notation system for diagnoses related to a specific period in hospital) [LEN 03], scheduling examinations and appointments, patient circuit being operated on the operating room, biology and imaging results. The EMR is an integrated system provided by a software provider (based on the model of an electronic resource planning package, comprising several modules and a unique database), which is interfaced with the administrative management software for patients. Alpha Hospital has approximately 9,000 health professionals (EMR users), including more than 1,400 medical staff (doctors, surgeons, anesthetists, midwives) and 500 trainee doctors, spread over three geographical entities. It has about 250,000 hospital stays per year and more than 500,000 external consultations. Different actors intervene in the EMR process. The EMR is managed by the staff of the ISD in liaison with the provider for the management of updates, breakdowns and new developments. The Hospital Information Delegation (HID), made up of two clinicians, one pharmacist, two health managers and one nurse, defines the management of access rights to the EMR, proposes actions for improvement and also makes numerous configurations in connection with the EMR to promote its adjustment with the clinicians’ needs. The most important part of the EMR is the module entitled “Synthesis”, which includes, with a tree system of folders and sub-folders and files, all the elements involved in the patient’s file, consisting of questionnaires or documents designed into the software (results, reports, etc.) or those scanned. According to the needs, it is possible to permanently modify the tree structure to reveal or not to reveal the sub-folders, to classify the documents by type of stay (consultation, complete hospitalization or of week, day) or in

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the order of the stays, by type (operative report, anesthesia report, etc.), or in chronological order without regard to stays. The Alpha Hospital is technically autonomous for the configuration of medical questionnaires and for a large number of configurations, including the choice of folders and subfolders and the possibilities of requests. The development of specific questionnaires and forms, with possible automatic postponements and the automatic generation of documents (for example, hospital reports, patient discharge letters), is possible, but requires a thorough knowledge of the options of configuration. Moreover, the information display screens can also be configured, according to different filters. These filters, as well as the input questionnaires, allow some adaptation of EMR to specialties and clinical processes. The EMR was introduced to all specialties and sectors within a period of 9 months. At the end of the implementation, all the professionals in the 74 clinical departments visualized the results of the examinations and reports and recorded the documents necessary for billing in the EMR. In 2014, one million drug prescriptions were sent to the pharmacy and there was still a paper prescription for some resuscitation units. Observations and care performed by paramedical personnel are fully recorded in the software. For medical observations, some departments used only EMR questionnaires, while others kept written documents that require the storage of paper documents. All the secretaries were equipped with scanners allowing the scanning of documents received by mail or provided by the patients. Each department or sector was therefore steered towards importing information into the EMR as documents, whose secretaries defined the labeling and chose the file and the folders in which to store them. During the implementation, the list of available folders included the one proposed by default by the provider, and also those used in the previous software to access laboratory results and reports. This list included more than 60 different files with labels containing sources of ambiguity (for example, with the existence of a folder “other documents”, and also “other results” or “various”). The reason is that, during implementation, the objective was to allow a great flexibility and to adapt to all the practices of each department, until then considered independent in the definition of the rules of organization for each paper medical file. As a result, the indexing of documents imported or recorded in the synthesis has been carried out in an anarchic fashion as new documents related to new patients were created or imported due to the lack of initially proposed rules and the

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flexibility provided by the system. A commission focused on the EMR indexation and architecture was therefore set up by the DHI in February 2015, aimed at defining not only the methods of common configuration and the rules of use for the digitization of documents, but also all the labels and the folder architecture in order to provide the most suitable configuration of the “Synthesis” module. 12.3.2. Methodology 12.3.2.1. Data collection – The data collection was done in two stages: - Answers to closed questions and two open questions (“in your opinion, what are the advantages and disadvantages of EMR?”), asked through a questionnaire in 2013, for staff involved in patient care: medical staff (doctors, surgeons, anesthetists, dentists, midwives, pharmacists) and paramedical staff (nurses, carers, social workers, medical secretaries, etc.). The survey’s construction was inspired by those of the TAM (Technology Acceptance Model) [DAV 89]. The questions came from the questionnaire validated by Chau and Hu [CHA 02]. We obtained 1,942 responses, of which 573 were from medical personnel [OLO 15a, OLO 15b, OLO 15c]. - Qualitative data from the observations of 23 meetings of the Committee for EMR Indexation and Structuring (CEMR-IS), between February 2015 and February 2017. These observations were made by an external researcher (first author of the chapter). They were supplemented by the analysis of the minutes of these meetings and the documents used by the CEMR-IS during this period (mainly requests based on the data related to the diversity and number of the folders and subfolders, on the documents indexing and on the use of document import modules). Several interviews with the doctor in charge of HID (PhD student in information systems and second author of this chapter) helped us to better understand the issues at these meetings. These data were the subject of an interpretative analysis. 12.3.2.2. Analysis of data from the survey Responses to closed questions were analyzed using the Sphinx Lexica software, which allowed us to obtain descriptive statistics and perform statistical correlations. In general, the three constructs (perceived utility, ease

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of use and sense of control [TAY 95], the degree to which an individual thinks they have the ability to perform a specific task) have been evaluated by clinical staff with a low score (3 or 4 on the Likert scale ranging from 1 to 7). The open responses were the subject of a lexical analysis, as well as a thematic analysis using the Alceste software, which allowed for the creation of four classes of discourses (according to the proximity of certain textual units). The classes identified are as follows: – Class 1 (majority): “Care plan”: prescription – care – plan – validation – error – transmission – treatment – sign – readability. At the center of this class are prescriptions and care plans, with difficulties encountered in readability of the vital signs and of the prescriptions, which lead to errors in the care plan. – Class 2: “Bad ergonomics”: not very user-friendly – tool – person – think – computer – real – software – design. These discourses are about the ergonomics of the software, considered poorly designed. Some users describe it as “a real disaster”, wasting staff time at the expense of their “real job” (care). Software bugs are also highlighted. – Class 3: “Reports and examinations”: minutes – mail – biological results – file – archive – imagery. The discourses insist on the modalities of reporting and planning, considered as impractical, as well as on the lack of readability of the biological results. – Class 4: “Find and consult information”: enter – management – file – information – structure – psychiatry – input – consult. Less homogeneous than the previous classes, this category concerns the difficulties of entering and consulting documents external to the Alpha Hospital and, in general, the difficulty of retrieving relevant information (particularly in psychiatry). Many respondents feel that the information is misclassified, and they want an automatic classification using headings or keywords. Overall, the responses highlighted the perceived lack of adaptation to different professions and specialties, as well as to particular cases (which are not marginal). It appears that the software was designed from the modeling of a standard pathway of an adult patient in general medicine undergoing a short hospital stay. The further away from this path, especially for

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emergency care, obstetrics, pediatrics and especially neonatology and psychiatry, the less useful and usable the software functions seem to be. This perceived lack of adjustment to specific cases may be a factor in diminishing the perceived utility of the software, while many respondents note in their open responses the potential utility of such an information system if it is modified and adapted (taking into account the customization of the user interface, protocols and specialty forms). The staff regrets the lack of “flexibility” to adjust the software according to the needs (for example, making emergency appointments in obstetrics, not provided for by the planning management module). Prescription appears in a majority of the comments and seems to be a major issue. Respondents report problems with prescription management, particularly because of the difficulty in easily visualizing terminating treatments and the adequacy of drug dosages. This result is not surprising since the concern about misuse increases with medical risk and the significance of the consequences for the patient. This issue concerns: – The input or manipulation error (due to the poor ergonomics of the EMR and the related information overload), which can lead to the loss of important information or directly to a wrong prescription. – The error of reading the information at the ongoing prescription or treatment level of prescriptions, especially regarding dosages (especially in pediatrics), which may lead to a lack of supervision and correction. The wording of the medical prescription and its display for nurses in the care plan are sources of ambiguity. – The risk of discontinuity of prescriptions when transferring a patient from a computerized unit to a unit that has retained a paper prescription or to another health facility. Some health professionals said that the software is not suitable for their department, especially in the following specialties: – Pediatrics, because of the absence of a growth curve, an essential element to the specialty. – Neonatal care, because of the specificities of posology calculations for small weights and the difficulty of continuous drug delivery, of the specificities of nursing care and of the different types of blood tests.

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– Midwifery: midwives are both prescribers and executors, which had not been taken into account in EMR configuration (the EMR access for prescribing are open only to doctors). In addition, they highlight the lack of parameters related to the monitoring of the pregnancy curve, the difficulty of accessing prenatal file results, as well as the difficulty of adjusting the schedule to make urgent appointments. – Resuscitation: these units did not provide a computerized prescription, at the time of the survey. Nevertheless, the specific characteristics of resuscitation (frequent and often reevaluated prescriptions, for which the consequences of dosage error can be immediately dramatic) entailed an important apprehension for the implementation of a specific EMR module. – Psychiatry: this department highlights the fact that group activity is not taken into account and that access to EMR is difficult, particularly for detained patients. – Emergencies: the other specific software is used in addition to the EMR, which is necessary to access hospital records, previous biological results or those of the short-term hospitalization unit, which requires the use of both tools. – Hematology: EMR is considered unsuitable for patients who warrant a very important biological monitoring, even leading to a return to paper for prescribing planned assessments over time. In brief, the results show, on the one hand, an insufficient readability of EMR information and, on the other hand, insufficient flexibility of the EMR for customization according to the clinical work (and information) processes, moving away from a standard support process [OLO 15b]. 12.3.2.3. Observation data analysis and analysis of the reports of the CEMR-IS meetings The cases handled by this commission show that clinicians have become accustomed to recording or importing data into the EMR in a specific way, which other users of another clinicians may find unintuitive or unsuitable. For example, for the management of patients with chronic illnesses and multiple morbidities, the global view of the information recorded by the different specialties is essential for the continuity of care. As another example, laboratory certification procedures require the biologist to control the way in which the results of the biological examinations are viewed by the

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clinicians, whereas the clinicians may prefer to be able to compare some results in the form of tables or graphs between themselves or during laboratory time. In general terms, CEMR-IS deals with the following issues: – What are the EMR files and folders that should be common and which ones should be in the specialties? – What kind of documents should be indexed in each file (for example, medical requests)? – How should we name and organize files and folders to reduce ambiguity in interpretation and mis-indexing? – What are the significant views and on which criteria should they be defined? The work of the commission aims to define a standard presentation format. The shared assumption is that the types of folders and similar files should be presented in the same way to facilitate the information search by the users. Information units (folders and files) must be clearly identified to facilitate access and browsing. Indexing rules include the naming and labeling of folders and files, organization rules for indexing and ordering records, and defining the types of documents for each file. Until now, the work of the CEMR-IS consisted of defining files that must be common (shared by all medical departments) or specific to each medical department and defining indexing rules for medical and nursing records, consultation forms, external documents and office models (for example, for prescriptions). This work required identifying duplicate files and informing their owners about the removal of one of them. Nevertheless, the monitoring of files and folders is necessary. The committee’s job is to organize consistent files and folders to reduce redundancy and misinterpretation that made it difficult to find relevant information. Monitoring the actual use of files and folders would be necessary to find out if this work is effective and to identify workarounds. As a general rule, each meeting proceeds as follows: the HID manager raises a problem, he suggests one or more solutions, and the other participants, in particular the EMR specialists, analyze the feasibility of the solutions. Sometimes the problem is referred by a field doctor, who has an operational problem with naming a folder or a sub-folder. When a solution is accepted by the majority, an action plan is defined, including indexing

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changes made by the ISD or the provider, communicating these changes to clinical staff, as well as editing and communication of an administrative procedure by the quality manager when the rule is related to the administrative task (notably secretarial work). When the modification is not linked to a rule, but only to the deletion of duplicates, the head of HID delivers the proposal decided at a meeting to the health professionals involved and submits it for their agreement. Sometimes the commission asks for more information about the files; thereafter, the health professionals involved present their practices and needs at a committee meeting to find the best solution with the other participants. When field staff objects to the committee’s proposal, they send an email to the HID to explain their point of view. Sometimes the HID officer meets them and explains the committee’s decisions and the different possibilities; they then decide together what the best indexing solution is. In some cases, no change is made because the proposal causes other readability issues. This work requires a lot of negotiation and discussion time. For example, the head of HID has made a proposal to simplify the naming of the folder “Allergology/dermatology examinations”; this proposal required both the agreement of the referring physician in allergology and the referring doctor in dermatology in order to find a compromise that consisted of designing two different folders: allergology examinations and dermatological examinations. Sometimes commission members fail to reach consensus, such as creating a new file called “miscellaneous documents” to index outpatient documents that are scanned when the patients arrive at the hospital. The request from a doctor was discussed at a committee meeting. The head of HID highlighted the difficulty for doctors to search for information in different files, while the referring secretary pointed out that a file containing all the external documents would be a catch-all folder. The CEMR-IS members of CEMR-IS tried to simplify and homogenize the naming and reduce the vagueness encountered in the interpretation of the type of documents to be included in a file. For example, the results can be indexed in the following files: specialized file, biology results or test results. The decisions taken are communicated to the users, or to a medical department if this decision concerns a single department. In some of these cases, the committee’s proposals are discussed with the relevant department before making decisions (for example, to reformulate and index the files of

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the infection control team). Some changes depend on the provider (for example, merging the files, which are coded in the EMR), while others can be done by the EMR (in particular, naming folders, creating or deleting models or requests). Nevertheless, the compromise between the general rule and the specific case (exception to the rule) is difficult to define. This compromise is made on a case-by-case basis, after discussion of different arguments. For example, a problem is related to the reports of the medical consultation meetings within a team or between several disciplines or pluri-professional: Should they index the reports in the same folder for all departments? Is it better to find and record information if these folders are customized for each department? (This last option was finally chosen). Other issues are related to cross-sectional clinical records (for example, the file on patient falls). Another difficulty is related to customization through the configuration of questionnaires and queries in the EMR. In general, the monitoring and updating work for the ISD increases as new types of questionnaires and templates are created. More than 2.4 million questionnaires were entered by EMR users as part of patient care in 2015. Some general questionnaires were created by the provider during EMR implementation, others were created by the ISD, and still others by HID doctors. A total of 65 doctors were authorized by the HID to personalize their questionnaires themselves. The request to create a questionnaire was important but sometimes with developments that did not lead to a satisfactory use: in November 2016, the ISD identified 1,296 questionnaires (of different types) and 506 desktop templates developed but not used for more than six months. Therefore, the CEMR-IS has decided to hide (using an “invisible” status) these models, waiting for the users to express the need to use them, and to delete them if users do not express this need. Here is another example: a committee meeting was held to analyze office automation models (for medical reports, certificates or requests for patient consent or agreement) indexed in the EMR in order to select those that are common and those that are specific, and check if they are indexed correctly into the folders and files. The doctors and the referring secretaries of the HID felt that many models were created by specialties, even if they were similar to those of other departments. Often only the address and signature were different.

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The CEMR-IS therefore had to arbitrate permanently between standardization and flexibility (exceptions made for certain departments and sectors), as well as between the different needs of health professionals. For example, the laboratory’s certification procedures require the biologist to control how the results of clinical examinations are viewed by clinicians, while clinicians may prefer to be able to compare certain results in tables or graphs with each other or in time. 12.4. Discussion and conclusion Open responses to the questionnaire administered to the health professionals in the Alpha Hospital can be related to the results of other previous studies. Thus, the ergonomic deficiencies of EMR, highlighted by the respondents, have been widely emphasized in the literature, as well as the inadequacy of EMR to the complexity, diversity and uncertainty of clinical processes [BER 01]. We think it is important to look in-depth at “classes” 3 and 4, which are less discussed in the literature: the organization and readability of the information recorded in the questionnaire or of the external documents imported into the EMR. These factors lead to the relevance of the quality of the information circuit and are particularly important because of medical hyper-specialization and the very large number of health professionals who can intervene in the care of the same patient. The relevance of the information recorded and searched for in the EMR depends on the context of each specialty and even each pathway or clinical process. The information entered in an EMR by doctor A is relevant for doctor B only if it is currently available, reliable and updated (most often in real time), for example, in the context of the administration of drugs or making medical decisions. The CEMR-IS attempts to reduce the ambiguity of the wording and the indexing of the information and to facilitate the readability of the EMR for the users, by arbitrating between what must be common information (and thus standardized for all medical departments) and what should or can remain personalized (specialty files, specific settings of questionnaires and office models).

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In the literature on information systems, the quality of information is defined according to several dimensions: relevance, comprehension, conciseness, completeness, accuracy [PET 08] or updating [NGU 14]. The assessment of the relevance and quality of information when using information technology is often insufficient in the area of health [NGU 14]. In addition, the various authors evaluating information systems in the hospital field are most often in the theoretical current of evaluating the success factors of an information system [DEL 03] and are less interested in the various interpretations of the information depending on the department or the clinical sector. The classic characteristics of information within a system, namely speed and ease of access, reliability, relevance, security, integrity and confidentiality of data, were associated by Reix & Fallery with the possibility of transforming data into information and then into knowledge [REI 11]. Indeed, the contextualization of information is linked to the fact that the diagnostic approach and the delivery of patient care are supported by a very large quantity of heterogeneous and diversified work processes, which constitute, for a given patient, a complex continuum [BER 01]. Overall, the information meaning is constructed throughout a process that is dynamic and unpredictable, through the input of information, its correction, and the retrieval and correction of information recorded by others [KIM 14]. The tacit knowledge that is mobilized there may not fit with the codification of information [KIM 14]. The facts cannot be “fixed” but are open to interpretation and reinterpretation in the evolving context of a patient’s story. This contextual nature of clinical information makes it difficult to define information to be coded for all specialties and the creation of indexing rules. This requires participation and co-construction by the users involved, step by step, according to each type of information (medical observations, hospitalization reports, test reports, etc.) in order to reduce the equivocate information resulting from heterogeneous indexing of the same types of information while retaining interpretive flexibility and up-to-date access to information. To conclude, based on the analysis of answers to a questionnaire and the interpretative analysis of the observations and documents of the CEMR-IS, this chapter highlights the importance of organizing information in the EMR, meaning the structure of folders, subfolders, files and documents or subfolder structures, their naming and indexing rules. The cross-sectional

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results of the survey and the observations suggest that the insufficient readability of the input and indexed information in the EMR is a consequence of an initial laissez-faire attitude. Standardization, through naming rules, for example, is necessary to ensure readability and therefore the quality of information, while maintaining customization or exceptions on a case-by-case basis. The organization of information is an issue that is not well covered in the literature on the implementation and use of EMR. Yet, it is a guarantee of the quality of information as perceived by health professionals, who need to quickly find the information they need. It requires arbitration and co-construction with the professionals involved, and this has to be done continuously. In addition, a form of standardization seems necessary for some questionnaires or office models, while others require customization for configuration, according to the needs of each department, therefore each context. This expert work involves ongoing translations and negotiations between health professionals and computer scientists, and therefore a detailed knowledge of the practices and functioning of the hospital, which cannot be left to the EMR provider’s decision. However, this work is little recognized in hospitals, where, generally, the professionals are not the ones who configure technology [ROM 04]. 12.5. References [ASH 07] ASH J.S., SITTIG D.F., POON E.G. et al., “The extent and importance of unintended consequences related to computerized provider order entry”, Journal of the American Medical informatics Association, vol. 4, no. 14, pp. 415–423, 2007. [BER 01] BERG M., “Implementing information systems in health care organizations: myths and challenges”, International Journal of Medical Informatics, vol. 2, no. 64, pp. 143–156, 2001. [BJØ 09] BJØRN P., BURGOYNE S., CROMPTON V. et al., “Boundary factors and contextual contingencies: configuring electronic templates for healthcare professionals”, European Journal of Information Systems, vol. 5, no. 18, pp. 428– 441, 2009. [BOO 09] BOONSTRA A., GOVERS M.J., “Understanding ERP system implementation in a hospital by analysing stakeholders”, New Technology, Work and Employment, vol. 2, no. 24, pp. 177–193, 2009.

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[KIM 14] KIMBLE C., “Electronic health records: cure‐all or chronic condition?”, Global Business and Organizational Excellence, vol. 4, no. 33, pp. 63–74, 2014. [KOP 05] KOPPEL R., METLAY J.P., COHEN A. et al., “Role of computerized physician order entry systems in facilitating medication errors”, JAMA, vol. 10, no. 293, pp. 1197–1203, 2005. [KOP 08] KOPPEL R., LEONARD C.E., LOCALIO A.R. et al., “Identifying and quantifying medication errors: evaluation of rapidly discontinued medication orders submitted to a computerized physician order entry system”, Journal of the American Medical Informatics Association, vol. 4, no. 15, pp. 461–465, 2008. [LEN 03] LENAY O., MOISDON J.-C., “Du système d’information médicalisée à la tarification à l’activité Trajectoire d’un instrument de gestion du système hospitalier”, Revue française de gestion, vol. 5, pp. 131–141, 2003. [LLU 11] LLUCH M., “Healthcare professionals’ organisational barriers to health information technologies - A literature review”, International Journal of Medical Informatics, vol. 12, no. 80, pp. 849–862, 2011. [LUD 09] LUDWICK D.A., DOUCETTE J., “Adopting electronic medical records in primary care: lessons learned from health information systems implementation experience in seven countries”, International Journal of Medical Informatics, vol. 1, no. 78, pp. 22–31, 2009. [NEB 05] NEBEKER J.R., HOFFMAN J.M., WEIR C.R. et al., “High rates of adverse drug events in a highly computerized hospital”, Archives of Internal Medicine, vol. 10, no. 165, pp. 1111–1116, 2005. [NGU 14] NGUYEN L., BELLUCCI E., NGUYEN L.T., “Electronic health records implementation: an evaluation of information system impact and contingency factors”, International Journal of Medical Informatics, vol. 11, no. 83, pp. 779– 796, 2014. [NOR 05] NORMAN G., “Research in clinical reasoning: past history and current trends”, Medical Education, vol. 4, no. 39, pp. 418–427, 2005. [OLO 15a] OLOGEANU-TADDEI R., GAUCHE K., MORQUIN D. et al., “La capacité d’appropriation, une capacité organisationnelle immatérielle négligée dans l’adoption des systèmes d’information et de gestion”, Innovations, vol. 2, no. 47, pp. 79–100, 2015. [OLO 15b] OLOGEANU-TADDEI R., MORQUIN D., “Understanding the acceptance factors of an Hospital Information System: evidence from a French University Hospital”, American Medical Informatics Association Annual Symposium, San Francisco, USA, 14-18 November 2015.

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[OLO 15c] OLOGEANU-TADDEI R., MORQUIN D., BOURRET R., “Understanding the perceived usefulness and the ease of use of a hospital information system: the case of a French University Hospital”, Studies in Health Technology and Informatics, no. 210, pp. 531–535, 2015. [OLO 16] OLOGEANU-TADDEI R., MORQUIN D., VITARI C., “Perceptions of an electronic medical record (EMR): lessons from a french longitudinal survey”, Procedia Computer Science, no. 100, pp. 574–579, 2016. [ORL 95] ORLIKOWSKI W.J., YATES J., OKAMURA K. et al., “Shaping electronic communication: the metastructuring of technology in the context of use”, Organization Science, vol. 4, no. 6, pp. 423–444, 1995. [PAR 12] PARK S.Y., LEE S.Y., CHEN Y., “The effects of EMR deployment on doctors’ work practices: a qualitative study in the emergency department of a teaching hospital”, International Journal of Medical Informatics, vol. 3, no. 81, pp. 204–217, 2012. [PAS 00] PASCAL C., Gérer les processus à l’hôpital : une réponse à la difficulté de faire ensemble, Thesis, Lyon-3 University, 2000. [PAS 03] PASCAL C., “La gestion par processus à l’hôpital entre procédure et création de valeur”, Revue française de gestion, vol. 5, pp. 191–204, 2003. [PET 08] PETTER S., DELONE W., MCLEAN E., “Measuring information systems success: models, dimensions, measures, and interrelationships”, European Journal of Information Systems, vol. 3, no. 17, pp. 236–263, 2008. [POB 14] POBA-NZAOU P., UWIZEYEMUNGU S., RAYMOND L. et al., “Motivations underlying the adoption of ERP systems in healthcare organizations: Insights from online stories”, Information Systems Frontiers, vol. 4, no. 16, pp. 591–605, 2014. [REI 11] REIX R., FALLERY B., KALIKA M. et al., Systèmes d’information et management des organisations, Vuibert, Paris, 2011. [RIV 11] RIVARD S., LAPOINTE L., KAPPOS A., “An organizational culture-based theory of clinical information systems implementation in hospitals”, Journal of the Association for Information Systems, vol. 2, no. 12, pp. 123–162, 2011. [ROM 04] ROMEYER C., FABBE-COSTES N., “Les obstacles à la mise en œuvre des SICAH (Systèmes d’Informations Centrés sur les Activités Hospitalières)”, Logistique & Management, vol. 1, no. 12, pp. 63–82, 2004.

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Postface

Since the advent of La Gazette de santé: contenant les nouvelles découvertes sur les moyens de se bien porter et de guérir quand on est malade (1773–1829) as one of the first journals on the subject, intended for physicians, and the effort of medicine popularization at the beginning of the 20th Century, the public’s relationship with health has evolved. The production of this book has led us to encounter a readership and in particular, readers. It has filled an information gap by providing answers to the need to understand how and why an illness is emerging, being prevented or treated, and is driven by recent progress, improved hygiene conditions and perhaps by the increase in the population’s educational level. We went from an almost blind trust to a trust that could be described as at least enlightened. During the 20th Century, forms of knowledge on health have multiplied. The knowledge acquired of illnesses at university, which I observed in my own work with a population of general practitioners,1 slipped during professional practice and with the temporal distance of initial training, toward a knowledge recognized as more therapeutic. The pharmaceutical industry through its mediators – the medical visitor but also very varied objects such as medication samples accompanied by leaflets, newspapers, information leaflets, audiocassettes, television programs, all strictly reserved for the medical profession – provided a wide range of information. More recently, and for all audiences, to health magazines, popular books written Postface written by Viviane COUZINET. 1 Couzinet Viviane, La documentation médicale des médecins généralistes à Toulouse, Thesis, under the supervision of André Tudesq, université Bordeaux Montaigne, 1984. Confidence and Legitimacy in Health Information and Communication, First Edition. Edited by Céline Paganelli. © ISTE Ltd 2018. Published by ISTE Ltd and John Wiley & Sons, Inc.

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by doctors of all the specialties of the field, health topics of magazines intended for a mainly female readership, news magazines, and the daily press and television shows, health sites and forums have been added regarding networks between patients. The desire to be in good health is presented as a civic duty: not to contaminate others, not to widen the social security deficit, to be responsible for one’s own health and to keep oneself in shape. It is also the concern of public authorities who, through high-profile campaigns, offer screening and vaccinations and impose words that aim to shock – “smoking kills” – and gain a reaction. If the concern is individual, it is also collective and engages the responsibility of everyone. However, the medical profession, a depository of a very specialized and inaccessible knowledge that provides power, that of stopping suffering, preventing or delaying death, has seen this power largely questioned by the proliferation of media, who knew how to find a communication niche but also a commercial one. They have also caused a cacophony because, despite the labels and certifications, it is not always possible for every citizen to recognize, not just the true from the false, but the reliable from the unreliable, especially when the consultation of what can now to be qualified as a source is done by a person suffering from illness. Where is the trust? How is it constructed? What are the issues of legitimization? How do we make decisions in a strong emotional context? What is changing the widespread availability of information? There are so many questions to which the presented research tried to bring answers to. The infocommunication angle, here chosen, is part of the social urgency of a return to trust that has been severely tested by pharmaceutical “scandals”. The legitimization of information, the guarantee of its reliability to restore trust, to renew dialogue become observables to participate in a better understanding of what is happening between patients and caregivers. The subject is not exhausted but the diversity of the observed fields, methods, angles of observation and social urgency of the issue, especially but not only, on vaccination, because it affects the vulnerable in society (like children and the elderly) deserved that researchers in the information and communication sciences take hold of these questions. This work is therefore particularly welcome. It should be followed by others, thanks to the creation of this new series.

List of Authors

Paméla BAILLETTE IAE Perpignan MRM Montpellier France Mylène COSTES LERASS Jean Jaurès University Toulouse France Viviane COUZINET LERASS Paul Sabatier University Toulouse France Ève DUBÉ Institut National de Santé Publique du Québec Quebec Canada

Aurélia DUMAS GRESEC Grenobe-Alpes University Grenoble France Clément DUSSARPS IMS Espé Aquitaine Bordeaux France Denis DUSSARPS Centre Expert Autisme du Limousin Limoges France Dominique GAGNON Institut National de Santé Publique du Québec Quebec Canada

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Géraldine GOULINET-FITÉ MICA Michel de Montaigne University Bordeaux France

Dorsaf OMRANE LERASS Paul Sabatier University Toulouse France

Madjid IHADJADENE Paragraphe Paris 8 University France

Céline PAGANELLI LERASS Paul Valéry University Montpellier France

Anna LEZON RIVIÈRE Paragraphe Paris 8 University France Michel MANNARINI IAE Via Domitia University Perpignan France Pierre MIGNOT LERASS Paul Sabatier University Toulouse France David MORQUIN MRM Montpellier France Roxana OLOGEANU-TADDEI MRM Montpellier France

Didier PAQUELIN Faculté des sciences de l’éducation Laval University Quebec Canada Adrian STAII Elico Jean Moulin University Lyon France Nathalie VERDIER LERASS Paul Valéry University Montpellier France Maryline VIVION Laval University Quebec Canada

Index

apomediation, 32, 240 autism, 10, 49, 67, 68, 71–73, 79, 83, 84 breast cancer, 107–111, 113–118, 121, 123, 126, 128, 200 care, 21, 70, 72, 83, 122, 138, 151, 223–235, 237–241, 243, 244, 248, 259 CHU, 138, 259 computerized patient file, 251, 252, 254, 256, 265 confidence crisis, 1, 45, 46, 71, 72, 107–109, 129 connected health, 195, 196, 199, 202, 205, 206, 208–212, 214, 216, 217 object, 209, 219 credibility, 23, 31, 33–36, 51, 55, 71, 128, 143

information-communication device, 140, 144, 147, 152, 179, 187, 189, 224, 241, 243 practices, 71, 107–109, 117, 128, 129, 177, 184, 189, 223, 244 information-seeking, 3, 6, 7, 9, 12, 22, 23, 30–32, 36, 46, 51, 68, 71, 83 informational practices, 23, 26, 36, 87, 88, 90–93, 101, 102, 148, 229 interface-actor, 159–162, 172 internal medicine, 159, 160, 165–172 medicine, 3, 7, 8, 10–16, 29, 46–48, 52, 69–71, 83, 92, 94, 97, 98, 107, 109, 113, 115, 121, 123–125, 137, 167–169, 178, 182, 184, 190, 202–204, 214, 216, 220, 221, 225, 226, 230, 234, 239, 240, 242, 244, 246, 248, 253–256, 258, 261–265 music therapy, 136, 137, 139, 140, 143, 147, 149, 151, 152

D, H, I, M

O, P, S, V

digital uses, 202, 223 hospital, 226, 252, 255, 256, 263, 265, 267 information system, 116, 244, 252, 253, 260, 266

occupational health, 177–179, 182–185, 189 patient, 9, 11, 67, 69–71, 83, 93, 95, 119, 137, 151, 224, 228, 230–232, 234, 235, 242–244, 252, 253, 256, 258, 260, 263, 266

A, B, C

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prevention, 2, 107–113, 115–118, 120, 121, 123–127, 177–189, 200, 201, 206, 243 social media, 9, 36, 45, 50–52, 55

vaccination, 1, 3, 5, 9, 12–14, 16, 21, 22, 25, 27, 28, 31, 34, 35, 37, 44–55, 58, 61, 108

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