e-Services: Toward a New Model of (Inter)active Community 3030018415, 9783030018412

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Alfredo M. Ronchi

e-Services Toward a New Model of (Inter)active Community

e-Services

Alfredo M. Ronchi

e-Services Toward a New Model of (Inter)active Community

Alfredo M. Ronchi Politecnico di Milano Milano, Italy

ISBN 978-3-030-01841-2 ISBN 978-3-030-01842-9 https://doi.org/10.1007/978-3-030-01842-9

(eBook)

Library of Congress Control Number: 2018961013 © Springer Nature Switzerland AG 2019 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Cover Photograph: Pëtr Il’ič Čajkovskij Statue in Moscow / Pantheon Dome Rome, © 2018 The Author This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Preface

The editorial series “e-Citizens: Being Human in the Digital Age” aims to explore the rich set of technologies and applications that characterise the living environment of citizens in the digital age and is intended to call attention to fundamental transformations in social organisation and structure. The main technologies and issues have been carefully described in volume one; applications devoted to e-Democracy are the core of volume two; the present volume is devoted to e-Services, encompassing Health, Learning, Culture, Media and News. In order to introduce this volume, let us review a little bit of the history of information technology. One of the most significant changes to occur in the field of information technology over the last few decades was the implementation of real-time communication and information exchange between computers—in one word: networking. A computer was originally considered to be like Leibniz’s1 “monad”, an ultimate atom without windows and doors: a sealed entity. Intercommunication processes enabled external access to these monads, allowing information and data exchange between them and thus multiplying their added value; networks of computers possess expanded functionalities and services. A number of different stand-alone proprietary networks were gradually merged into the network of networks: the Internet. The Internet represents one of the most successful examples of the benefits of sustained investment and commitment to research and development of information infrastructure. Beginning with the early research in packet switching, the government, industry and academia have been partners in evolving and deploying this exciting new technology.2

1 Gottfried Wilhelm Leibniz (also Leibnitz or von Leibniz) was born on 1 July 1646 (Leipzig, Germany) and died on 14 November 1716 (Hanover, Germany). School tradition: rationalism. Main interests: metaphysics, epistemology, science, mathematics and theodicy. Notable ideas: calculus, innate knowledge, optimism and monad. See http://en.wikipedia.org/wiki/Gottfried_Leibniz, last accessed February 2019. 2 B. M. Leiner et al. (2003) A brief history of the Internet. Internet Society, Reston, VA (see http:// www.isoc.org/internet/history/brief.shtml, last accessed February 2019).

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Of course, one of the main drivers for Internet usage was the introduction of the hypertext transfer protocol (http), which led to the birth of the World Wide Web, thanks to the contributions of Tim Berners-Lee and Robert Cailliau at CERN3 in 1990 and the success of Mosaic at NCSA4 in 1992, the first web browser. Conceived and developed by “end-users”, one of the most important characteristics of the Web community, in the first two or three years of its life, was the bottomup decision mechanism it employed. Enhancements and extensions were proposed, discussed and implemented mainly by active members of the community of researchers and experts involved in the process. The Web community at that time was a mixture of ICT experts and scientific content managers. The double role of these prosumers was probably one of the key innovative aspects of that community during that period. The subsequent gradual drift from technology developers to general users is a natural process that often occurs with mature technologies. It happened, for instance, in the field of computer graphics, where computer graphics pioneers worked side by side with creative people and special effects (fx) designers. The development of Internet technology unleashed creative energies, the first generations of Websites, mainly due to volunteers often not belonging to the IT sector; don’t forget that the cradle of the Web was CERN, the temple of physics and subatomic particles. Web technology was for sure an enabling technology, offering to almost everyone the opportunity to contribute to the creation of the textual and, later on, visual cyberspace. The Internet has incredibly facilitated access to mass communication. This influenced even news and journalism as we will describe later. It combines a worldwide broadcasting capability with a mechanism for information dissemination, which offers us the opportunity to reach a wide audience with minimal effort. Before the Internet, the only way to reach wide audiences was radio and television broadcasting, and before these were invented, mainly printed materials or heralds. In addition, it is a medium that encourages collaborations and interactions between individuals and their computers almost without regard for geographic location. After the “publishing” hangover, it was the time to manage and structure and index this blob of content and upgrade from information provision to service provision. ICT-based innovation “is not only a matter of technology”. The main aim of this work is to bridge the gap between technological solutions and successful implementation and fruitful utilisation of the main set of e-Services. Different parameters are actively influencing the success or failure of e-Services: cultural

3 The name CERN is derived from the acronym for the French “Conseil Européen pour la Recherche Nucléaire”, or European Council for Nuclear Research, a provisional body founded in 1952 with the mandate of establishing a world-class fundamental physics research organization in Europe. At that time, pure physics research concentrated on understanding the inside of the atom, hence the word “nuclear”. https://home.cern, last accessed February 2019. 4 National Center for Supercomputing Applications, http://www.ncsa.illinois.edu, last accessed February 2019.

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aspects, organisational issues, bureaucracy and workflow, infrastructure and technology in general, users’ habits, literacy, capacity or merely interaction design. This requires having a significant population of citizens willing and able to adopt and use online services and developing the managerial and technical capability to implement applications to meet the needs of citizens. A selection of success stories and failures, duly commented on, will help the reader in identifying the right approach to innovation in governmental and private e-Services. This volume is part of a collection of books; the first three volumes are e-Citizens: Toward a New Model of (Inter)active Citizenry, e-Democracy: Toward a New Model of (Inter)active Society and e-Services: Toward a New Model of (Inter)active Community, all of them published by Springer International 2019. Target Audience Public authorities, decision-makers, stakeholders, solution developers, university students. Prerequisite Knowledge of Audience Informed on e-Content and e-Services, basics on technology side. Milano, Italy

Alfredo M. Ronchi

Being Human in the Digital Age

Interior laboratory—Scene 53 “The two enter a cylindrical laboratory. There is a huge glass turbine in the middle with the metal glove inside. A DNA chain scrolls on the computer screen. . . Mactilburgh starts the operation rolling as Munro puts his hand on the self-destruct button, ready to use it. Thousands of cells form in the heart of the generator, an assemblage of DNA elements. Then the cells move down a tube, like a fluid, and gather in an imprint of a HUMAN body. Step by step bones are reconstructed, then the nervous and muscular systems. Whole veins wrap around the muscles. An entire body is reconstructing before our very eyes. . . ASSISTANT. . . End of reconstruction, beginning of reanimation.” [LE CINQUIÈME ÉLÉMENT (THE FIFTH ELEMENT) IS A 1997 FRENCH SCIENCE FICTION FILM DIRECTED BY LUC BESSON AND STARRING BRUCE WILLIS, GARY OLDMAN AND MILLA JOVOVICH.]

This scene shows the way to reconstruct human bodies starting from a minimum portion of DNA; the science fiction machinery performs a “3D print” of an entire body, decoding the instructions encapsulated in the DNA; the scene looks very close to addictive 3D printing. This technology enjoyed great popularity in different fields from dentists to hobbyists; a very special 3D printer was on display on the occasion of the WSIS Forum 2018 in Geneva; this 3D printer used chocolate instead of monomers, printing chocolate blocks instead of bones. Does science fiction anticipate our near future even in the field of e-Health? Some experiments carried out in the field of biomaterials and biotechnologies have already tested the use of 3D printers with nanoparticles, so we never know. Anyhow 3D graphics and printing are already in use to create different prostheses. The field of education and learning was till now the one that didn’t benefit too much from digital technologies, but at the same time suffered more than many other sectors from the shift of paradigm due to cyber technologies. The young are significantly influenced by digital technology; as we will see later in the chapter devoted to e-Learning, the huge number of hours spent playing videogames and watching television has trained their brains to behave in a very different way enabling parallel processing and immediate interaction. These completely new

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abilities, together with the digitally empowered direct access to information, have created an increasing gap in information transmission between “digital immigrant” teachers and “digital native” pupils. They are used to processing parallel input from audio, video and chats, incredibly improving their ability to absorb information and rather complex concepts. They take advantage of virtual and enhanced reality to activate the most powerful and phylogenetic learning system, the perceptive-motor system. They learn by directly experiencing the specific subject by being virtually immersed in that environment, by being “hands-on”, trying and trying again; in other words, “learning by doing”. Following the same fil rouge, we approach “Culture” as a wide territory encompassing different humanities such as heritage in the UNESCO vision, as described in detail in e-Culture5, but even issues and drawbacks due to the combined action of information communication technologies and globalisation. The global trend tends to homogenise and flatten diversities in many fields; diversities have to be considered richness not barriers. As a consequence, a relevant number of cultural models and languages risk being jeopardised and disappearing; they refer to “minorities”, or as better expressed by UNESCO IFAP they refer to “minoritised” languages and cultural models under the pressure of the dominant ones. After learning and culture, the last chapter is devoted to media and news, one of the sectors that on one side deeply took advantage of ICTs and on the other side significantly contributed to forging the brains of young generations. This phenomenon is termed neuroplasticity by experts; social psychology offers compelling proof that thinking patterns change depending on an individual’s experiences. It is a common understanding that people who grow up in different cultures do not just think about different things; they actually think differently. The environment and culture in which people are raised affects and even determines many of their thought processes. A major part of the population has already started the journey from Citizens to e-Citizens: already books medical services and downloads the reports through the Internet or receives customised press reviews thanks to news aggregators collecting breaking news concerning their preferred topics on the fly. Let’s now start this journey from Health to Media. Milano, Italy

Alfredo M. Ronchi

5 Ronchi A.M. (2009), e-Culture: Cultural Content in the Digital Age, ISBN 978-3-540-75273-8, Springer, Berlin Heidelberg.

Contents

1

e-Health: Background, Today’s Implementation and Future Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 Recent Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.3 e-Health in Europe . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.4 A Global Vision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.5 From Medical Systems to e-Health . . . . . . . . . . . . . . . . . . . . . . . 1.6 From e-Health to m-Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.7 Archiving Electronic Patient’s Folders . . . . . . . . . . . . . . . . . . . . 1.8 In the Clouds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.8.1 Health in the Clouds . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.9 Ethical Dimensions of the Information Society . . . . . . . . . . . . . . 1.9.1 Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.9.2 Information Ethics (Infoethics) . . . . . . . . . . . . . . . . . . . 1.9.3 Ethical Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.9.4 Bioethical Aspects in e-Health and “m-Health” . . . . . . . 1.10 e-Health and Privacy Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.10.1 The RFID Radio Technology, Ethics and Privacy . . . . . . 1.10.2 Medical Device or Fitness Tool? . . . . . . . . . . . . . . . . . . 1.10.3 The Use of Data and Privacy . . . . . . . . . . . . . . . . . . . . 1.10.4 Informed Consent and the Warsaw Declaration . . . . . . . 1.10.5 EU General Data Protection Regulation (GDPR) . . . . . . 1.11 A Galaxy of Health Services . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.11.1 Services in the Field of Drugs . . . . . . . . . . . . . . . . . . . . 1.11.2 How to Report on Patient’s Satisfaction . . . . . . . . . . . . . 1.11.3 Education and Awareness . . . . . . . . . . . . . . . . . . . . . . . 1.11.4 Mobile Virtual Laboratories and Mobile Medical Facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.11.5 “Makers” in the Field of Health . . . . . . . . . . . . . . . . . .

1 2 2 6 9 12 16 18 22 26 28 28 29 31 32 33 34 35 38 40 43 44 46 46 48 54 55

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1.12

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3

Dependency and Technological Vulnerabilities . . . . . . . . . . . . . 1.12.1 The Self-Management of Health . . . . . . . . . . . . . . . . . 1.13 “Seniors”: An Increasing User Sector . . . . . . . . . . . . . . . . . . . . 1.13.1 Social Weakness . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.13.2 Aging in Europe . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.13.3 Most Common Chronic Diseases . . . . . . . . . . . . . . . . 1.14 MUSME: The Interactive Museum of History of Medicine . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . . . . .

e-Learning: How Teaching and Training Methods Changed in the Last 20 Years . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 The European State of the Art as It Appears from Statistics . . . . 2.3 The Digital Revolution and Other Trends . . . . . . . . . . . . . . . . . 2.4 The Human Capital . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5 ICT Bottlenecks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6 ICT and the Young . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.7 Leading the Change or Losing the Challenge? . . . . . . . . . . . . . 2.8 Dealing with Digital Natives . . . . . . . . . . . . . . . . . . . . . . . . . . 2.9 Causes and Effects: The Origin of This Pandemia . . . . . . . . . . . 2.10 Lost Something, Any Concern, Drawbacks? . . . . . . . . . . . . . . . 2.11 Some Key Aspects of Computing That Make the Difference . . . 2.12 Gamification . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.13 Educational Institutions Policies . . . . . . . . . . . . . . . . . . . . . . . . 2.14 Virtual Laboratories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.15 Videocassette and On-Line Lectures . . . . . . . . . . . . . . . . . . . . . 2.16 Improvements Due to Technology . . . . . . . . . . . . . . . . . . . . . . 2.17 Future Developments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.18 It Is Time to Reshape Educational Methodology . . . . . . . . . . . . 2.19 Closing Remarks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. 69 . 70 . 71 . 74 . 76 . 77 . 78 . 79 . 81 . 84 . 86 . 87 . 88 . 89 . 90 . 91 . 92 . 95 . 96 . 97 . 111

e-Culture: On Culture in the Digital Age . . . . . . . . . . . . . . . . . . . . . 3.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Digital Tangible and Intangible Heritage . . . . . . . . . . . . . . . . . . 3.3 Cultural Heritage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Origin of Museums . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Science and Technology Museums . . . . . . . . . . . . . . . . . . . . . . . 3.6 Art Collections . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.7 The Culture Cycle . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.8 Entering the Digital Communication Era . . . . . . . . . . . . . . . . . . 3.9 Virtual Universes and Heritage . . . . . . . . . . . . . . . . . . . . . . . . . 3.10 Super Information Highways v/s Information Society . . . . . . . . . 3.11 The Invisible Universe of Data . . . . . . . . . . . . . . . . . . . . . . . . . 3.12 A Web of Cultural Content . . . . . . . . . . . . . . . . . . . . . . . . . . . .

56 58 59 60 61 62 64 67

115 116 118 119 120 122 123 123 125 126 132 135 136

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3.13 3.14 3.15

142 143 148 151 152 157 158 162 164 165 166 166 166 167 167 168 172 179 179 181 183 184

4

Technology and Recommendations . . . . . . . . . . . . . . . . . . . . . . Extending the View on Heritage . . . . . . . . . . . . . . . . . . . . . . . . European Regulations and Heritage . . . . . . . . . . . . . . . . . . . . . . 3.15.1 The Regulatory Framework . . . . . . . . . . . . . . . . . . . . . 3.15.2 EU Regulations and the Impact on Cultural Heritage . . . 3.15.3 The Economics of Cultural Heritage . . . . . . . . . . . . . . . 3.16 The Concept of “Values” and Its Potential Impact . . . . . . . . . . . . 3.17 The Economic Dimension of “Values” . . . . . . . . . . . . . . . . . . . . 3.18 The Role of Taxonomy in Information Search . . . . . . . . . . . . . . 3.19 A Taxonomy of European Cultural Heritage “Values” . . . . . . . . . 3.20 A Preliminary List of “Values” . . . . . . . . . . . . . . . . . . . . . . . . . 3.20.1 Economic Values . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.20.2 Cultural Values . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.20.3 Communicability Values . . . . . . . . . . . . . . . . . . . . . . . 3.20.4 Development Values . . . . . . . . . . . . . . . . . . . . . . . . . . 3.20.5 Accessibility and Fruition Values . . . . . . . . . . . . . . . . . 3.20.6 Value of Universality . . . . . . . . . . . . . . . . . . . . . . . . . . 3.21 From Theory to Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.22 The Role of a “Value” Platform . . . . . . . . . . . . . . . . . . . . . . . . . 3.23 Culture Value Chain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.24 Value Approach: Further Developments . . . . . . . . . . . . . . . . . . . 3.25 Problems and Issues: Early Experiences . . . . . . . . . . . . . . . . . . . 3.26 Making Cultural Heritage Alive: The Role of Cultural Mediators . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.27 Emerging Professional Profiles . . . . . . . . . . . . . . . . . . . . . . . . . 3.28 Closing Remarks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

187 189 191 191

e-Journalism and Media . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 The “Ws” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 The “Information” Society . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Freedom of Expression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 The First “Asynchronous” Way to Communicate . . . . . . . . . . . . 4.5 Back to Journalism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.6 Characteristics of Information Products . . . . . . . . . . . . . . . . . . . 4.7 Timeliness of Delivery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.8 Short Product Lifecycles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.9 Perishability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.10 Media of the Future; Can It Be Profitable? . . . . . . . . . . . . . . . . . 4.11 Different Phases of On Line Newspapers . . . . . . . . . . . . . . . . . . 4.12 New Media: Evolution or Revolution? . . . . . . . . . . . . . . . . . . . . 4.13 Languages on the Internet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.13.1 Globalisation and Cultural Diversity . . . . . . . . . . . . . . . 4.13.2 ICT and the Internet in a Small World . . . . . . . . . . . . . . 4.14 Information as a Valuable Good . . . . . . . . . . . . . . . . . . . . . . . . .

195 196 196 196 197 205 205 206 207 208 208 209 210 210 211 213 217

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4.15 4.16 4.17 4.18 4.19

Public Domain and Copy Left . . . . . . . . . . . . . . . . . . . . . . . . . . Unprotected Works . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Works That Are No Longer Protected . . . . . . . . . . . . . . . . . . . . Works That Have Never Been Protected . . . . . . . . . . . . . . . . . . . Market Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.19.1 Subscription or Purchase of a Single Copy . . . . . . . . . . . 4.19.2 Newspapers and Gadgets . . . . . . . . . . . . . . . . . . . . . . . 4.19.3 Free Model . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.19.4 Freemium, That’s to Say Free + Premium Services Model . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.19.5 Key Feature of the Internet News . . . . . . . . . . . . . . . . . 4.20 The Sources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.21 Digital Natives: What Are They Looking For? . . . . . . . . . . . . . . 4.22 Fake News . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.23 Cyber Technology and Public Opinion . . . . . . . . . . . . . . . . . . . . 4.24 Evolution of Fruition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.25 New Consumer Model . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.26 WSIS C9 Media . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.27 Public Service Broadcasting . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.28 Case Studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

220 221 221 221 223 223 224 224 225 225 226 229 230 233 236 237 238 239 247 256

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261

List of Abbreviations

AAAA AfDB App CARICOM CDO CIO CPI DESA DPADM EEA EGDI EIA EPI FOI FOIAs G2G GCC GFW GIS GNI GODAN GPS HCI HCI HTML ICT ICTs IDRC ILO INTOSAI

Addis Ababa Action Agenda African Development Bank Software Applications Caribbean Community and Common Market Chief Data Officer Chief Information Officer Corruption Perceptions Index Department of Economic and Social Affairs Division for Public Administration and Development Management European Environment Agency e-Government Development Index Environmental Impact Assessment e-Participation Index Freedom of Information Freedom of Information Acts Government-to-Government Gulf Cooperation Council Global Forest Watch Geographic Information System Gross National Income Global Open Data for Agriculture and Nutrition Global Positioning System Human Capital Index Human–Computer Interface Hypertext Markup Language Information and Communication Technology Information and Communication Technologies International Development Research Centre International Labour Organization International Organization of Supreme Audit Institutions xv

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IoT ITU LDC MAMA MDGs MENA METEP MFI MYS NEPAD NGO OECD OGD OSI OSM PPPP RSS SDGs SIDS SME SMS SWOT TGEG TII UGC UNCTAD UNDG UNDP UNECA UNECE UNECLAC UNEP UNESCAP UNESCO UNESCWA UN-OHRLLS

UNPOG UNSC

List of Abbreviations

Internet of Things International Telecommunication Union Least Developed Country Mobile Alliance for Maternal Action Millennium Development Goals Middle East and North America Measurement and Evaluation Tool for Engagement and e-Participation Micro Finance Institutions Mean Years of Schooling New Partnership for Africa’s Development Non-governmental Organisation Organisation for Economic Co-operation and Development Open Government Data Online Service Index Open Street Map Public–Private–People Partnerships Really Simple Syndication Sustainable Development Goals Small Island Developing States Small and Medium Enterprise Short Message Service Strengths, Weaknesses, Opportunities and Threats Task Group on e-Government Telecommunication Infrastructure Index User-Generated Content United Nations Conference on Trade and Development United Nations Development Group United Nations Development Programme United Nations Economic Commission for Africa United Nations Economic Commission for Europe United Nations Economic Commission for Latin America and the Caribbean United Nations Environment Programme United Nations Economic and Social Commission for Asia and the Pacific United Nations Educational, Scientific and Cultural Organization United Nations Economic and Social Commission for Western Asia United Nations Office of the High Representative for the Least Developed Countries, Landlocked Developing Countries and Small Island Developing States United Nations Project Office on Governance United Nations Statistical Commission

List of Abbreviations

UNU-IAS URL W3C WOG WRI WSIS

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United Nations University Institute for the Advanced Study of Sustainability Uniform Resource Locator World Wide Web Consortium Whole of Government World Resources Institute World Summit on the Information Society

Chapter 1

e-Health: Background, Today’s Implementation and Future Trends

The analysis will adequately take into account the overall context including social, ethical and technological issues. It draws a “big picture” where we consider different regions of the world and different needs. The contribution outlines to what extent e-Health represents true innovation, which means having positive impact on society, making better the life of citizens in a broad sense. We all know that the healthcare sector differs from country to country as a unique mix of public, unlicensed private, private and even voluntary set of services; not to forget insurance companies. Starting from today’s added value applications we will try to identify future trends and goals.

© Springer Nature Switzerland AG 2019 A. M. Ronchi, e-Services, https://doi.org/10.1007/978-3-030-01842-9_1

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1.1

1 e-Health: Background, Today’s Implementation and Future Trends

Introduction

How can we measure success in e-Health? Is it a mere question of saving money or does it involve more? It is a foreseeable win-win strategy, better service, more success stories, less costs? Is e-Health an opportunity to bridge the healthcare gap around the world? What can we expect from virtual laboratories and electronic patient folders? Do online medical services impact patient privacy? Last but not least, do electronic patient folders last forever as usually required by law? Moreover, very often we hear of user-centred design, and interaction design and of the positive effects that good “design” can have, especially for industrial products and on-line services; but what effect can a proper design have “indirectly” on the user? How much can the “design” do for our welfare, to help us feel better in our home or even exert a positive influence on our overall health? The healthcare sector cannot be considered as any other “e-Sector”. What do patients, or more simply Citizens, expect accessing healthcare premises or services? What is really relevant for them in the different regions of the world (e.g. on-line solution to check if a medicine is “original” or a dangerous clone)? Does the “big brother” effect due to remote monitoring and tele-medicine1 play a positive role in such a context? What are the indicators of success of the operation; how do we determine the degree of satisfaction of the user? By “commercial” success, the content of dedicated interviews, the expressed appreciation? The expectancy of life in the last century has significantly grown; if we consider this aspect as a performance indicator we can probably agree on a positive trend. Performance measuring in the healthcare sector may be related to a set of parameters having as the main one the effect on the patient. Apart from this we can consider organisational issues, the promotion of a culture of wellbeing as a follow-up of the well-known motto “prevention is better than cure”, time and money savings, information and knowledge sharing and more. Applications and services will cover information, monitoring, education, safety and more.

1.2

Recent Background

The health sector, if compared with other industries in adopting information technology, suffered a delay of 10/15 years until recent times. Early deployment of health information technology (HIT as it was known at that time) was primarily for financial accounting of medical transactions. Even if in some way the health sector has been the birthplace of one of the most relevant and pervasive inventions of the last century, the transistor, it was originally developed and patented as a device to

1

Term first coined in the 1970s by Thomas Bird.

1.2 Recent Background

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fight deafness2. Later on, over time a number of cutting edge technologies added value application in the Health sector: computer graphics, virtual reality, robotics, tele-presence, artificial intelligence and of course networking, to mention the main ones. Experiments with computerized medical recordkeeping began in the 1960s mainly in the US. The first electronic health records (EHRs) were designed and deployed starting in late 1960s and early 1970s. By the middle of the 1970s approximately 90% of the hospitals in the US used computers for business functions; there was similar penetration in Europe. Hospitals used to access mainly big mainframes as shared computational resources in order to manage their own accounting systems. Later on, they extended the use to manage partial patient folders related to medical exams. In that period of time 1743 sites in the US processed electronic data with some medical content. The majority of physicians adopted EHR systems in the 1980s thanks to the diffusion in the market of the personal computer. Of course, PCs at that time they were mainly stand-alone resources; few of them were connected to mainframes as “intelligent” terminals. The early use of EHR systems by medical doctors was mainly to keep a personal record of patient references, specific health conditions and treatments and last but not least billing. In the 1980s and 1990s incredible steps forward in diagnosis and care were due to the increasing use of information technology; many times the re-use of computer graphics turned into medical imaging led to cutting edge medical systems. Moreover, late in the 1990s the introduction of 3D colour graphics broke the flat, greyshaded and cryptic world of medical imaging. PACS (Picture Archiving and Communication System) and laser printers revolutionised the management of medical images as well. Of course, the enabling technology acting as backbone of such evolution or, better, revolution in medical imagery was the creation of local broadband networks. Between the 1980s and the 1990s, the number of computer-based medical exams increased significantly from CT to NMR, 3D imagery, endoscopy Nano-devices and “cyborg” prostheses.

2

The invention of Transistors by John Bardeen, Walter Brattain, and William Shockley in 1947. R.R. Henley and G. Widerhold, An analysis on automated ambulatory medical record systems, AARMS Study Group, UCSF, June 1975. 3

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1 e-Health: Background, Today’s Implementation and Future Trends

3D digital reconstruction from Medical Imagery (EC Project Argonaute 3D)

In 1991, the Institute of Medicine4 in the United States declared the computerbased patient record (CPR) as essential for health care, a message reinforced 7 years later on the occasion of the revised version. The use of ICT in the medical sector enabled relevant innovations: distant assistance and information sharing. The medical system called Telehealth means “medicine at distance”, where “medicine” includes not only medical activities— involving ill patients—but also public health activities—involving healthy people [1] (Wootton 1999)5. In other words, telehealth is a process and not a technology, including many different health care activities carried out at a distance. For these reasons, the term “e-Health” is an umbrella word used to define the electronic enablement of the health and disability support services in order to [2, 3]: • empower individuals and their families to manage their own health and participate better; • improve the co-ordination and integration of care delivery to individuals; and • allow population health initiatives such as mapping notifiable diseases to occur in a timely fashion. In summary, e-Health services provide a unique set of tools for overcoming many of the challenges that health delivery systems are facing today. On one side, citizens want, and ageing societies will need, more and better healthcare. On the other side public funds are limited, and many citizens cannot afford, or do not want to pay more for it. As underlined by Robinson [4], “For healthcare providers in modern healthcare systems, this is a challenge. The right approach to developing, implementing and using effective e-Health can help address this challenge. Healthcare providers can use e-Health to improve quality and expand their capacity to meet this increasing demand within available resources.”

4 Richard S. Dick, Elaine B. Steen, and Don E. Detmer, Editors—Institute of Medicine, The computer based electronic medical record: essential technology for healthcare, National Academy Press, Washington, DC, 1991. 5 Wootton, R. (Ed.). (1999b). European telemedicine 1998/99. London: Kensington Publications Ltd.

1.2 Recent Background

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According to Wootton [1] there are basically two reasons why e-Health is used: “either because there is no alternative, or because it is in some sense better than traditional medicine”. Addressing this issue, the goal of the chapter is to show that a wide spectrum of e-Health applications provided better quality and improved productivity. In particular we will focus on the actual European situation. However, the success of e-Health is not linked to the solution of technical problems only. e-Health is a complex process whose successful exploitation requires a significant attention to ergonomics, human factors and organizational changes in the structure of the relevant health service. For quite a long time Healthcare Information Technology (HIT) has been mostly a chimera and pioneers in the realm have faced relevant difficulties and unsuccessful stories. Some implementations played the role of bad ambassadors, slowing down the progress. Some European telecom operators, for instance, invested time and resources in tele-medicine having no positive return of investment. Practitioners have generally regarded EHR as costly, cumbersome, and offering little help for tasks at hand. A number of experiences were carried out in the past but these were mainly considered as experimental services, addressing a limited number of users/patients, having almost no real impact on the field. The incredible and quick diffusion of the Internet and broadband connection has to be considered as a turning point in the health care domain, as it happened in other domains such as e-Government or e-Learning. Internet and broadband enabled a completely new scenario: e-Health was born! The evolution trend was from one to one to one to many and many to many and broadband made the difference. Thanks to the characteristics of the Internet some of the early projects addressed the need to exchange and share medical information, more specifically that related to rare pathologies. One of the first high-level projects in this field was the so-called G7 CARDIO project (1993–95); at that time the focus in the field of networking was on ATM connections, the “silver bullet” of the time. Back to CARDIO, the basic concept was to share as much as possible information and medical data related to rare heart pathologies in an attempt to combine the efforts in order to solve serious problems. Thanks to an innovative approach, multimedia documents such as medical standard pictures (DICOM) and medical standard video clips were available on line for the benefit of the medical service. Tele-medicine, remote-ECG, tele-monitoring, tele-consultation and more are very well-known keywords. Tele-medicine and tele-consultation are still the key approaches to providing medical care in developing countries. Telecommunication networks and IT-enabled peer-to-peer connections and data transfer thanks to modems and, later on, digital lines.

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1 e-Health: Background, Today’s Implementation and Future Trends

Tiny “computers” have been embedded in a number of portable medical devices and computer aided design systems have become the digital companions of bio-engineers, together with nanotechnologies6 and mechatronics. The current environment in which health care is practiced and information technology available to its practitioners is significantly different from that which existed in the last decades. Due to the Internet technology the overall architecture of distance services has been reshaped and a limited set of peer-to-peer services have become, at the end, a full set of bidirectional multimedia interactive services including web 2.0 applications and more advanced and sophisticated solutions. There are differences in the temporal nature of information, the responsibilities of each member of the health care team, the need for a communications infrastructure to facilitate coordination of care, and other logistical7 concerns which impact the detailed design of information systems. Changes in the health care environment produced fundamental shifts in the delivery of health care, favouring outpatient care over impatient care, primary care over specialty care, and guidelines-driven care over autonomous decision-making. Technological advances have overcome some barriers to computer-based patient records (CPRs) (e.g., World Wide Web applications that operate across distances on many different computers) and heightened the visibility of others (e.g. confidentiality policies and legislation). Let’s try to better focus on this domain. A first attempt to classify the services might be by user: medical doctors, patients/citizens, and institutions. Another potential taxonomy might be by service: web portals (hospitals, experts, medical/chemical companies, patients, etc.), on-line or off-line medical care services (exams and consultations, virtual reality therapies, etc.), management systems (medical unit information systems, etc.), and educational applications (medical doctors, paramedics, employees, patients and citizens). The opportunities offered by e-Health may benefit additional sectors such as rare pathologies, developing and emerging countries and “travellers”.

1.3

e-Health in Europe

Healthcare is one of the most information-intensive sectors of European economies and can greatly profit from recent advances in information and communications technology. Given that the health sector currently lags behind other

6

Researchers working in medical nanorobotics are creating technologies that could lead to novel health-care applications, such as new ways of accessing areas of the human body that would otherwise be unreachable without invasive surgery. 7 In principle, in order to fully benefit from the e-Health approach, a general reshape of the organisation is needed including logistics and other infrastructure. Communication and access to information are strictly related to organisational and infrastructural issues.

1.3 e-Health in Europe

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sectors in the use of this technology, e-Health, there is great potential for rapid, sustained growth8. For more than 30 years, the European Commission has developed through R&D programmes ways of improving the delivery of healthcare through the application of state-of-the-art technologies, and the promotion of new systems and services based on these9. EU action on health is based on three key principles10: integration, sustainability and focus on priority issues. This has led to an integrated approach to health-related work at the Community level, making health-related policy areas work together towards achieving health objectives. The EU Health Strategy, set out in May 2000, aims to integrate all EU healthrelated policies and concentrate resources where the Community can provide real added value, without duplicating the work of the Member States or international organizations11. General health policy lines were set out in the concept of a Europe of Health in 2002. Work was undertaken on addressing health threats, including the creation of a European Centre for Disease Prevention and Control12 (ECDC), developing crossborder co-operation between health systems and tackling health determinants. A short presentation of ECDC, as provided by the centre, is: “The European Centre for Disease Prevention and Control (ECDC) was established in 2005. It is an EU agency aimed at strengthening Europe’s defences against infectious diseases. It is located in Stockholm, Sweden. ECDC works in three key strategic areas: it provides evidence for effective and efficient decision-making, it strengthens public health systems, and it supports the response to public health threats. ECDC core functions cover a wide spectrum of activities: surveillance, epidemic intelligence, response, scientific advice, microbiology, preparedness, public health training, international relations, health communication, and the scientific journal Eurosurveillance. ECDC disease programmes cover antimicrobial resistance and healthcare-associated infections; emerging and vector-borne diseases; food- and waterborne diseases and zoonosis; HIV, sexually transmitted infections and viral hepatitis; influenza and other respiratory viruses; tuberculosis; and vaccine-preventable diseases. All in all, ECDC monitors 52 communicable diseases.” The EU Health Forum13, which brings together organizations active in health to advise the European Commission on health policy, is also a key element of the EU 8

Stroetmann et al., 2006—Carolyn Steele Gray, Stewart W. Mercer, et al., 2017. May you need further information, please refer to http://ec.europa.eu/health/, last accessed February 2019. 10 European Commission, 2000. 11 European Commission, 2000. 12 European Centre for Disease Prevention and Control https://ecdc.europa.eu/en/home, last accessed February 2019. 13 EU Health Forum 2010 https://ec.europa.eu/health/interest_groups/eu_health_forum/open_ forum/2010_en, last accessed February 2019—EU Health Forum 2017 Gastein https://www.ehfg. org/conference/programme/, last accessed February 2019. 9

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Health policy. The Forum enables the health community to participate in health policy-making from the start. EU health policy increasingly involves co-operation with and between the Member States, in particular on cross-border issues such as patient mobility. In 2004, in order to review the May 2000 Health Strategy and consider whether and how it needed to be revised in the light of developments, the Commission launched a reflection process14. The main outcome of this work is the concept that e-Health should be supported by the widespread dissemination of best practices. These should include the impact on access to healthcare and on its quality, assessments of cost productivity gains, as well as examples of addressing liability in telemedicine, reimbursement schemes, and accreditation of e-Health products and services. In 2005, the Commission proposed a new strategic framework: i2010. One of the key societal challenges recognized in the i2010 strategy is to make real improvements in the provision of healthcare, when our ageing society is placing increasing demands on the underlying services and infrastructure. The e-Health market was in 2005 some 2% of total healthcare expenditure in Europe but has the potential to more than double in size, almost reaching the volume of the market for medical devices or half the size of the pharmaceuticals market. Revenue in the “e-Health” market will amount to more than three million euros in 2018. Revenue is expected to show an annual growth rate in the period 2018–2020 of 14.3%15, resulting in a market volume of more than four million euros in 2020. The market’s largest segment is the segment “Heart Failure”, with a market volume of about 1200 million euros in 2018. If we compare the European market with the United States one it is shown that most revenue is generated in the United States (US $ 3821 million in 2018). Research projects funded by the EU seek to develop e-Health systems and services that focus on prevention, personalization and patient empowerment; special care is posed on gender-related medical treatments. Current research activities focus on: personal health systems and the prevention of illness and diseases; improving patient safety; modelling and simulation of human physiology and disease-related processes.

14

European Commission (2004). e-Health—making healthcare better for European citizens: An actionplan for a European e-Health area—com 356. Brussels: Commission of the European Communities. Online: https://ec.europa.eu/digital-single-market/en/news/e-health-making-healthcare-better-euro pean-citizens-action-plan-european-e-health-area, last accessed February 2019. 15 Source Statista: https://www.statista.com/study/29501/digital-health-industry-in-europe-statistadossier/, last accessed February 2019.

1.4 A Global Vision

1.4

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A Global Vision

In every country and at every level, information and communication tools are central to health. Access to ICTs, supported by a sound enabling environment, is critical for health services development, progress and their availability. This applies whether e-Health is used by individuals searching for health information or support, professionals and facilities providing health care services, or public health services ensuring monitoring, alert and response; or for strengthening citizen-centred health systems. There are some pillars related to the renovated vision. (a) Encourage the adoption of national e-Health strategies focusing on integrating ICTs to support the priorities of the health sector and to provide reliable and affordable connectivity to benefit all citizens; (b) Promote the use of ICTs to strengthen health care and public health services, with special efforts to reach citizens in remote and under-served areas in developing countries; (c) Facilitate innovation and access to e-Health applications to support health professionals, improve local access to information, and enable the flow of information in health services and systems; (d) Ensure public trust and confidence in e-Health, through collaboration and broad adoption of legislations, policies, regulations and other measures that address the concerns of the health sector, including those of a cross-border nature; (e) Integrate the use of ICTs in preparing for, sharing information on, and responding to disease outbreaks, disasters and other emergencies requiring inter-sectoral collaboration and exchange of information in real-time; (f) Encourage to creating effective funding mechanisms, business models and partnerships to accelerate and sustain e-Health efforts beyond pilot stages and ensure scalability; (g) Enable access to the world’s medical knowledge through the use of ICT; (h) Share good practice, evidence and progress on e-Health, to enable informed development of e-Health activities worldwide; (i) Promote the measurement of e-Health and its impact the social and economic development at national and regional levels. The use of digital technologies contributes even to the preservation and exploitation of traditional medicine as it happens, for instance, for both Chinese Traditional Medicine and African natural medicine. Beijing Traditional Chinese Medicine Digital Museum16, original title 北京中医 药数字博物馆, is a virtual museum of popular science available in both Chinese and English aiming to spread the culture of Traditional Chinese Medicine as it relates to

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Beijing Traditional Chinese Medicine Digital Museum (China 2011) Producer: Ms. Wang Ting— Beijing Traditional Chinese Medicine International Exchange and Cooperating Center (BTCMIECC), http://en.tcm-china.org, last accessed February 2019.

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1 e-Health: Background, Today’s Implementation and Future Trends

scientific knowledge. Traditional Chinese Medicine (TCM) is said to be actively practised in 162 countries and is increasingly attracting the attention of international medical researchers. As natural methods and low carbon lifestyles become the hallmark of the twenty-first century, TCM, a veritable miracle of medical achievement, is becoming more and more attractive to discerning people worldwide. As the authors outlined on the occasion of the World Summit Award award ceremony held in Cairo (Egypt) in 2011: “In China, no museum about Traditional Chinese Medicine exists, and the few affiliated to educational and research departments are inadequate”. For this reason, Beijing Traditional Chinese Medicine International Exchange and Cooperating Centre (BTCMIECC), supported by the Beijing Administration of Traditional Chinese Medicine, has built the Beijing Digital Museum of Traditional Chinese Medicine after 5 years of cooperation with Beijing University of Chinese Modern Medicine and Advanced TCM Education, and other well-known universities and research institutes. Among the topics included on the website are medical care, acupuncture, health and life, Qigong17, Tuina18, imperial court medicine, culture and history, cosmetic treatment, education, science and technology, and international cooperation. The website covers Traditional Chinese Medicine as well as the philosophy and Qi Kung19, which are all related to health and well-being of mankind. It also has a database that includes thousands of different kinds of herbs, specifying their usage and appearance. Navigation is easy and self-explanatory. It also has good interactive content on areas such as Qi Kung and shows videos of various kinds of Qi Kung and what they can be used for. This Digital Museum serves as a comprehensive archive and encyclopaedia for Chinese medicine and the Chinese way of maintaining health, which has 5000 years of history and demonstrates the harmony between mankind and nature. Natural treatments are often exploited online, Mamaherb.com20 is an internet platform enabling users from all over the world to access and evaluate information on alternative remedies. Having become the world’s largest free Natural Health resource, its goal is to function as a paradigm-changing tool in the field of alternative—and perhaps all—health-related knowledge. Users are able to research, rate, comment on, or discuss particular treatments and thus, with the help of other assessment tools, such as links to external references, be part of a huge project which aims to assess the effectiveness of natural and alternative treatments. Exploiting the universality of the internet, Mamaherb.com seeks to address two main issues: “What’s out there?” and “What actually works?”

17

Qigong is a holistic system of coordinated body posture and movement, breathing, and meditation used for health, spirituality, and martial arts training. 18 Chinese traditional massage, often associated with acupuncture and fire-cupping. 19 Qigong is a holistic system of coordinated body posture and movement, breathing, and meditation used for health, spirituality, and martial arts training. 20 Mamaherb (Israel 2009) http://www.mamaherb.com/ no more available on line.

1.4 A Global Vision

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If we consider the benefits due to e-Health in the rural areas of emerging countries, a case study is Sisu Samarakshak21 (Child Protector); it aims at making use of Information and Communication Technology to improve women’s and children’s health through enhanced community monitoring mechanisms. ICT can be used to empower communities and promote inclusion of vulnerable groups, especially of women and the disabled. The project offers a comprehensive and an integrated solution for addressing the needs of the community. Sisu Samarakshak is part of the strategy of information dissemination centres to provide accurate, timely, contextual knowledge to mother and child. The knowledge is created for community-based learning and support. Sisu Samarakshak contributes to bridging the gap between high-tech India and the rural poor. The project takes as an example a young woman unaware of her needs as a new mother; 25-year-old Gunamma did not pay much attention to her health during her first pregnancy. She worked very hard every day and didn’t eat properly. Her child, delivered at home, was a low-birthweight baby. Gunamma’s situation is not unique. Despite India’s reputation for high-tech sophistication, almost one third of the country’s children are underweight at birth—a condition that threatens new-borns’ chances for healthy growth, and even their survival. Across India, UNICEF has invested in placing life-saving knowledge in the hands of mothers and those who work with them. In the southern state of Andhra Pradesh, where about one third of children under five are underweight, Sisu Samarakshak is helping bridge the gap between high-tech India and the rural poor. Developed by UNICEF22 and partners, Sisu Samarakshak (SSK) was piloted in cooperation with the State Government of Andhra Pradesh and Hewlett-Packard India. The project is one example of how cooperation with the public and private sectors23 can put the benefits of technology into the service of the poor, a target of Millennium Development Goal 824. Through computer stations located in their villages, Sisu Samarakshak (SSK) allows rural communities in Andhra Pradesh to access basic childcare information on topics including care during pregnancy, new-born care, breastfeeding, hygiene and sanitation. Designed with input from rural participants, the messages are relevant and easily understood. The program is also easy to navigate through a touch screen or a mouse,

21

Sisu Samarakshak (India 2005) Organisation: United Nations Children’s Fund, URL: http:// unicef.in/PressReleases/263/Sisu-Samarakshak-receives-the-World-Summit-Award—2005-in-Tunis, last accessed February 2019. 22 Some country-specific information was provided by UNICEF country offices or drawn from UNICEF country office annual reports. 23 Public Private Partnerships (PPPs) are often active in the field of Health. This is one of the reason why we cannot consider Health as 100% public administration; a number of medical facilities are due to PPPs. 24 GOAL 8: Develop a global partnership for development http://www.un.org/millenniumgoals/ 2008highlevel/pdf/newsroom/Goal%208%20FINAL.pdf, last accessed February 2019.

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and its layout is picture-led and highly graphic with audio guides in several languages, making it accessible to all. The software program was piloted in 70 locations in Chittoor District. In 2005 the district administration installed SSK in 16 villages—reaching out to about 1000 women per village. Kadapah District, meanwhile, has conducted training for community service providers using the software and is working towards its installation in the entire district. SSK is already giving community health workers up-to-date information and changing behaviour. “Nine months back, when SSK was installed in my village, a new world of information and knowledge opened up for me, as well as for the entire community,” said Rama Devi, a voluntary change agent for her village in Chittoor District, in 2005. “SSK has helped change many old myths I held when I was rearing my children.” Where SSK is available, more women are also seeking medical consultation. “We are seeing a sudden increase in rural women now registering themselves in hospital for regular consultation with auxiliary nurses,” says Mrs. P. Geetha, a health and community coordinator in Chittoor. “Over the past 8 months, out of the 37 pregnancies in our area, 34 women chose to deliver in hospital.” In recognition of the simplicity of its messages and ease of navigation, SSK received the Manthan Award25 in 2005 in India and the 2005 World Summit Award26 in e-Health at the World Summit on the Information Society (WSIS). After this positive pilot, NASSCOM Foundation, supported by NASSCOM (National Association of Software and Service Companies), the leading information technology association of India, started to work with UNICEF to translate Sisu Samarakshak into several regional languages. Gunamma can attest to the benefits of using SSK. During her second pregnancy, a health worker encouraged her whole family to access the program. This time, her mother-in-law made sure Gunamma had healthy food and her husband insisted that she have the second delivery at the local hospital. And the family welcomed a healthy baby boy, weighing 3 kg.

1.5

From Medical Systems to e-Health

The rapid success of the Internet in the 1990s reshaped the previous scenario based on peer-to-peer modem connections. In the beginning, existent experimental procedures and trials were simply “rerouted” on the Internet. Very soon experts found an incredible opportunity and completely new scenario thanks to the increasing set of Internet technologies. The very well-known new opportunities offered by the World Wide Web drove a revolutionary vision that led to the birth of a new service sector: e-Health.

25 26

Manthan Award http://manthanaward.org, last accessed February 2019. World Summit Award https://www.worldsummitawards.org, last accessed February 2019.

1.5 From Medical Systems to e-Health

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The term e-Health includes all the previous applications and technologies but it means even additional services directly delivered to the citizens. One of the major characteristics of this new environment was the feeling of a more patient-centric concept of healthcare. The shift from technology serving medical doctors in caring for patients to new technologies providing direct support to the patients had and still has a positive impact on citizens. Let us simply take into account unified booking centres and administration; thanks to multimodal access points (phone, Internet, SMS, etc.) citizens may access medical services in a more rapid, efficient and even economic way. Healthcare institutions, on their own side, may benefit thanks to CRM27, ERP, and various database and optimization procedures. If we consider as relevant in this field the trust relation between patients/citizens and the healthcare institution, a tight connection and timely personalized information flux from the institution to the citizen is surely one of the first steps in order to achieve the goal. So far SMS or email messages as a reminder for a visit or exam or simply providing operational instructions before any interaction with the institution are probably appreciated. The whole bureaucratic procedure related to exams, from the reservation phase to the delivery of the results if implemented on-line, may save considerable amount of time and resources on both sides. From the patient perspective this means less time devoted, not needing to ask for one or more permissions at the working place, no transportation fees, etc. Some hospitals evaluated the overall economic benefits by finding a significant advantage for both the hospital and the community. Moreover, the implementation of patient medical folders28 accessible, with some limitations due to privacy, on the Internet in a multi-language environment is usually considered an added value service. Two main benefits are: the availability of the medical folder all over the world, appreciated by travellers, and the opportunity to save and access the full set of information related to an exam, not only that chosen on the fly29. Citizens usually perceive a major part of such services positively; there are of course some drawbacks in the implementation of similar applications. One of the first problems we face in implementing medical information systems is the lack of flexibility compared with handmade procedures. Additional troubles are caused by the rigid and traceable sequence of inputs and the enforced definition of responsibilities. Due to similar reasons it is easier to start from “off line” medical folders and historical data than open folders. The successful implementation of e-Health solutions, including the deployment of an interoperable electronic health record, may, in principle, reduce the costs and improve the quality of medical care. Cost reduction may include:

27

CRM, Customer Relationship Management; ERP, Enterprise Resource Planning. E.g. ULSS 8 Asolo on line Medical folder https://servizi.ulssasolo.ven.it/Fpaweb/index.aspx, last accessed February 2019. 29 This happens mainly in medical imaging; images captured by medical machinery that are not relevant for the specific problem are discharged (e.g. X-ray, CT, MNR, etc.); the electronic patient folder provides the opportunity to store all of them for future benefit. 28

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1 e-Health: Background, Today’s Implementation and Future Trends

• Innovative and better front office including different communication channels (mobile phone, Internet, voice, etc.), automatic resource optimization, automatic patient alerts, reminders and instruction; • Improved and automated workflow both on the medical side and administrative side; • Reduced expenses associated with record keeping (filing and retrieving paperbased documents), easy document sharing among different offices and units; • Reduced number of visits required, service delivery on the Internet30, including the availability of the full medical folder online in case of need even abroad. Among other implementations of the shared medical folder we can refer to the Catalonia Shared Medical Record (Spain 2009) and Citizen’s clinic archive: Individual clinical portability (Italy 2007); and to integrate the European scenario we can include Internet access to patient healthcare information (izip)31 (Czech Republic 2005).

Screenshot from Catalonia Shared Medical Record website

Catalonia Shared Medical Record32 is a database which seeks to maximise the quality of healthcare services by making available information on patients from Catalonian care centres. Selection and visualization of specific registers of 30

If possible—e.g. exams’ results, on line medical images, on line medical folders, etc. Internet access to patient healthcare information (izip), Organisation: IZIP spol. s r.o, http://www. izip.cz 32 https://web.gencat.cat/ca/temes/salut/, last accessed February 2019. 31

1.5 From Medical Systems to e-Health

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information regarding the patient’s medical history and care is carried out by a browser that can be accessed by health professionals and patients alike. The basic principle of the initiative is to allow an information exchange among different health organizations in order to facilitate and potentiate continuity of care, and to speed up diagnostic procedures by avoiding the repetition of unnecessary examinations. Citizens have access to their own clinical history via a personal digital certificate, and professionals through a federal certification system. Providing greater access to relevant information and better communication among professionals, the Shared Medical Record has the potential to save valuable time, money, and more importantly, lives. Citizen’s clinic archive: Individual clinical portability (Portabilità Clinica Individuale PIC) is promoted by the Medical Unit 8 of Asolo33 as “Health in the pocket”, that is to give citizens full cognitive autonomy of their health data, produced by diagnostics and treatments: this is the set of services provided by PIC. It is a web function that puts in the person’s pocket in real time both textual and medical imaging data of the assessments and therapies received with admission, an outpatient performance, a screening intervention, or an emergency action in the emergency room. PIC is the individual clinical archive updated and accessible everywhere and every time, with a personal security device to guarantee the privacy needs. PIC can be read in four languages (Italian, English, German, French) thanks to both its interface and the World Health Organization34 international coding of diseases, to effectively accompany the person in other countries, for consultation by foreign doctors and at nursing places. Internet access to patient healthcare information (izip)35 is the Czech Internet platform to access medical folders. The IZIP platform was activated in 2005 and re-shaped as ZDRAVEL in 2017 to provide better services. Files accessible through the Internet Access to Patient Healthcare Information project contain all necessary information about the state of a patient’s health and are accessible from any computer connected to the Internet. Information can be accessed by the patient or the doctors she/he gives permission to. Only healthcare workers registered in the IZIP system can update medical files. After registration, a patient receives an access code, known only to her/him. After initial registration (activation), she/he is able to access and read her/his medical file. Doctors and other healthcare workers can access these medical files, too, once they have been given permission. The IZIP electronic health book clients have been able to use the new ZDRAVEL system since September 4, 2017. All data from the IZIP platform was preserved and transferred to the ZDRAVEL system during the last quarter of 2017. The new system is accessible at www.zdravel.cz.

33

https://www.ulssasolo.ven.it/, last accessed February 2019. http://www.who.int/en/, last accessed February 2019. 35 Internet access to patient healthcare information (izip), Organisation: IZIP spol. s r.o, http://www. izip.cz later on accessible at www.zdravel.cz, last accessed February 2019. 34

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Summarizing potential quality improvements: • Real-time information transfer and access thanks to intranet, extranet, and Internet; • Availability and access, even from abroad, of a more complete and accurate set of medical data (patient folder), including documentation and medical images (e.g. CT36 and NMR scans or X-ray images) usually discharged by the specialists because they are not strictly related to their specific needs (but they are potentially relevant later on); • Fewer dangerous medical mistakes resulting from poor handwriting or other order entry errors (this seems to be one of the most frequent causes of danger); • Improved medical decisions through the use of structured data mining thanks to the creation of “ad hoc” ontologies and specific tags. This enables us to link together information related to the vast databank of historical medical folders providing an incredibly huge long-term knowledge base feeding health care decision support systems; • Easier quality assurance and statistical data extraction. This is simply a short list of both cost reduction opportunities and quality improvement tools; many other aspects will be pointed out in specific sections of the book (social, cultural, etc.).

1.6

From e-Health to m-Health

Mobile and portable devices are entering the Health world from both sides: medical side and patient side. Health organisations are tailoring their own e-Services in order to be accessible from mobile devices and take maximum advantage from this. Remote monitoring of long-term disease is more often offered to patients. This enhances the trust relationship between the patient and the health organisation; s/he is 247 under control and this cuts the need for patient and physician to physically meet each other, saving time and resources. Special wearable devices, e.g. wristwatches, are created for patients suffering from chronic diseases and elderly people in order to continuously monitor their vital parameters, actual location and even stance. They are equipped with global positioning systems, accelerometers, light sensors, blood pressure meters; heartbeat meters, skin humidity meters, wireless connections and more. m-Health is many times overlapping with the fitness and wellness sector. The number of wearable devices and applications in these sectors is growing at rapid pace. Smart phones equipped with specific APPs act as hubs that collect data from the different devices and sensors. The use of health or wellness APPs has a strong relation with privacy issues; when we install such APPs we agree on some requests concerning the

36

Computed Tomography, Nuclear Magnetic Resonance.

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17

collection and storage of our personal data, including some of them closely related to our health or lifestyle37; these data, if not explicitly allowed, cannot be used for any other purpose than the one we prescribed38. As a natural evolution of service provision, the additional shift from e-Health to m-Health led to the multi-channel and cross-channel access to the services. Elderly people may prefer to go to the front desk or use the telephone; other patients may access the services mixing up telephone and internet or mobile APPs. The use of multi-channels in order to provide health services is very usual. Of course, the health platform must be designed in order to allow such a flexibility in input and output, allowing users to start a procedure on a specific channel and continue the procedure on a different one, always ensuring the required level of privacy and cybersecurity. As an example of a mobile health system, we can consider EPI Life39. EPI Life is the world’s first mobile phone with integrated ECG (electrocardiogram) and health monitoring functions. Although portable ECG monitors have been in the market for 20 years or more they lack either the convenience and simplicity in operation or the means to provide timely feedback to the user. Through the convergence of mobile and medical (cardiac) technology, EPI Life has suitably addressed both these issues, offering a truly portable, easy-to-use ECG monitor with timely feedback to the user via SMS. Now, wherever they are, users will be able to know their current heart condition within minutes of recording and transmitting an ECG. EPI Life allows users to record their ECG simply by touching the sides of the phone with their fingers, eliminating the need for complicated electrodes or messy gels. EPI Life also allows the user to input key health parameters such as Blood Glucose, Blood Pressure and Cholesterol, and to transmit these data to their online Personal Health Folder, which can be accessed by the user via the Internet. ECGs are sent to EPI’s 24-hour Health Concierge from the device via mobile connection, where qualified doctors and cardiac technicians compare the ECG against the user’s baseline ECG and respond via SMS based on the results of the comparison. EPI Life, coupled with the 24-hour Health Concierge and online Personal Health Folder, offers remote health monitoring, allowing the end-users to have timely feedback on their heart condition anytime, anywhere. The ability to detect heart rhythm abnormalities at the point of symptom/discomfort means that ‘warning signs’ that may result in a fatal cardiac event will never be left unnoticed. Timely feedback on the ECGs sent also means that users are able to make informed decisions on their next course of action, be it visiting the hospital emergency department or the nearest 24-hour clinic. The highly scalable technology allows medical coverage to be extended into remote areas which have little or no access to medical services, making it perfect for rural health programs.

37

E.g. Weight, heartbeat, steps per day, diet and more. Please refer to the paragraph concerning privacy for an in-depth approach to privacy issues. 39 EPI Life (Singapore 2011), Producer: Ephone International (S) Pte Ltd, Mr. Adrian Lee, http:// www.headhunt.com.sg/employer-profile/2649-epi-mobile-health-solutions/, last accessed February 2019. 38

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1 e-Health: Background, Today’s Implementation and Future Trends

The success of EPI Life encouraged further development of the concept, so EPI has progressed in efforts and has developed a new generation of ECG devices that works with smartphones to enable remote health monitoring. Leveraging on its innovative technology and development capabilities, a secondgeneration product, EPI Mini, was created. It is a revolutionary mobile health monitoring device that connects to a user’s smartphone via Bluetooth and enables instantaneous recording of ECG and tracking of other health parameters. Simple to use, EPI Mini is designed for any person to record his heart rhythm anytime, anywhere, simply at the touch of his fingers. On top of having the existing features of EPI Life, the EPI Mini also allows up to five registered users.

1.7

Archiving Electronic Patient’s Folders

In the previous paragraphs we outlined the increasing success and need of e-Health and m-Health and specifically electronic patient records and digital patient medical folders. We explored the relevant benefits, consolidation of medical data coming from different sources, potential universal direct access, the potential implementation of artificial intelligence and machine learning procedures to analyse historical patient folders in depth to extract useful information, the richness and completion of the data set, and long-term accessibility. We must take into account some drawbacks such as, among the others, the risk of privacy infringement and data loss. In addition to these, the friction of staff in the implementation of strict data flow procedures that outline the key responsibilities in the detection of the disease, assigning appropriate treatment and timely administration of drugs. Taking into account the above-mentioned drawbacks we will discuss the one concerning privacy infringement in the specific paragraph of this book; the risk of losing data is instead the key topic of the present paragraph. In the huge and variegated scenario of digital preservation, this is the term that identifies long-term preservation of digital archives; patient folders used to have a very special and probably unique attribute: they could be accessible forever. Unfortunately, we don’t know much on the autopsy examination of Julius Cesar but we can consult the medical record of Napoleon to relaunch the thesis of murder. This is merely a question of proper conservation of physical archives all over the world if we deal with physical documents (documents, prints, images). On the contrary if we have the right to turn physical archives into digital archives discharging physical originals, this is not possible, in many countries, without an explicit approval by authorities; we immediately face the problem of long-term preservation of digital documents. Hospitals and health organisations are interested in the optimisation of physical archives; this sometimes means even reduction of the built surface devoted to host the archives. Digitisation seems to be an optimal approach but wisdom suggests keeping the physical original in a safe “dead archive”. Old hospitals used to host kilometres of paper, hand written, representing the historical archive of the patients,

1.7 Archiving Electronic Patient’s Folders

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their pathologies, and cures. The shift from traditional to digital patients’ folder can be performed according to different schemas: from scratch, when the whole set of folders hosted by the unit is turned into digital format; only active patients’ folders are turned into digital without any other archiving support; any other combination of time and archiving protocol with or without preserving of the traditional archive. The first approach to digitisation of archives enables the creation of a comprehensive medical history of the geographic area served by the hospital. If the digitisation of the paper-based archive is carried out to maximise benefits, that means not only storing the digital image of each page but also storing the textual content of the page, tagged according to a specific ontology suitable for the medical field; we will then be able to use data mining algorithms and artificial intelligence to extract interesting data concerning pathologies and cures and follow-ups. In a less risky environment the traditional archive, at least the historical one, is preserved and stored in a specific repository, protected by fire, water and other main risks. In the general framework of innovation, the repository can be equipped with technological infrastructure that will not only track and manage environmental conditions but even ease the identification of a specific historical patient folder, keeping costs as low as possible, thanks to barcodes or RFIDs. Once we make the decision to turn our traditional archive into a digital one, as already stated, we must face the problem of digital preservation40. People used to believe (and many still do) that digital formats were the ultimate formats for storing information indefinitely. The idea that texts, images and, more in general, data can be perpetuated by converting them into digital form is popular and widely supported. As a result, a significant amount of our documents and data rely on digital technology. But is digital technology really suitable for long-term preservation? And are electronic devices, which are required in order to access information stored in digital formats, durable enough to guarantee future access to this information? If not, what can we do to overcome this problem? The rapid evolution of technology makes the preservation of digital content a challenge. Considering the huge amount of data to be stored, including medical images due to NMRs, CT scans, etc., the amount of time invested to accomplish this task, and the length of time that such information needs to be stored41, it is important to address the issue of the long-term conservation of digital information; a problem that has largely been underestimated up to now. We need to consider two aspects: technological obsolescence and the temporary nature of “permanent” storage systems. Computer systems are aging; the media on which information is stored are disintegrating. Given this issue, what are the longterm implications of relying on current digital technology to preserve our archives?

40

Uwe M. Borghoff, Peter Rödig, et al. (2006) Long-Term Preservation of Digital Documents: Principles and Practices, ISBN 978-3-540-33639-6, Springer. 41 The time span is mainly related to the national regulations and data/document type (usually forever).

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1 e-Health: Background, Today’s Implementation and Future Trends

Even if we simply focus, for the moment, on basic digital content such as text, which is usually the main part of the content in a patient’s folder, we cannot guarantee that textual records stored in digital electronic form will always be accessible. Storage media are subject to degradation; they are not designed to survive for long periods of time as usually required by governments and public bodies. Magnetic and optic technology does not guarantee long-term access to stored information; tapes and disks lose their properties and are sensitive to environmental conditions such as heat, humidity, magnetic fields, static electricity, dust, fire, etc. The same happens for solid state digital archives. In addition, they become obsolete as the devices capable of reading them become out-dated and are mothballed. Old formats and standards are essentially shelved in favour of newer formats and standards. The same even happens for software standards, because ways of coding information and the quality of the information stored are constantly improving. This situation holds for both electronic records converted from already existent analogue forms (paper, medical images, video clips, etc.), and records that were originally created in electronic form (as it happens nowadays in medical imaging). For digital content that is derived from an analogue source, the analogue source (provided it is still available—e.g. historical patient folders or temporary paperbased folders) can be digitised again to new and improved standards and formats, so this issue is not a big problem. On the other hand, content that originated in digital form must be preserved based on the original record (e.g. digital imaging, digital signal streams, etc.). Until recently, documents were generally paper or film-based42. Film technology was popular because of its efficiency, usability, and robustness; and we now recognise that it is almost hardware-independent. In the 1980s the innovation due to PACS43 and its added value in managing medical images allowed converting all the analogue images into digital images to enable the centralised management of medical imagery and archival of the full set of images generated by the different medical scanners. The life cycle of the data will influence its own creation and will generate an accounting record for the resources to be preserved. Since prevention is better than cure, if we define preservation strategies we are halfway to the solution. The preservation problem involves several other aspects in addition to the bare technological ones: there are administrative, procedural, organisational, legal, IPR and policy issues surrounding long-term preservation of digital content. This increased complexity tends to be due to the different natures of digital and traditional physical documents. Online information such as web pages and databases are vulnerable, as much of their web structure becomes complex thanks to hyperlinks and cross references.

42 43

Usually X-rays, CT scans and NMRs, etc. Picture archiving and communication system—centralised management and image sharing.

1.7 Archiving Electronic Patient’s Folders

21

At least one aspect should be investigated before settling on a particular preservation approach: the overall cost of preservation. This involves considering the best way to ensure future access to information during the design phase of the long-term data set. This approach may involve some feedback on the way to choose technology and standards and even the way to shape data sets. Once the data set is created, in addition to infrastructure costs, running costs may include: additional room on storage devices to archive copies and/or documentation and metadata, software applications that manage data refreshing, and costs related to porting or emulation. A number of global studies and projects have been and are being carried out in digital preservation; for instance, the work carried out by the Taskforce on Archiving of Digital Information (94–96) on the mandate of The Commission on Preservation and Access and The Research Libraries Group Inc., as well as the OAIS Open Archival Information System project, CAMiLEON emulation and the VERS Victorian Electronic Record Strategy. Along with the ERA initiative launched by NARA, InterPARES I, II and III are some of the most well-known projects in this field. Among this set of projects, the International Research on Permanent Authentic Records in Electronic Systems (InterPARES)44 posed the focus more on authenticity of records; it aimed at developing the knowledge essential to the long-term preservation of authentic records created and/or maintained in digital form and providing the basis for standards, policies, strategies and plans of action capable of ensuring the longevity of such material and the ability of its users to trust its authenticity. An additional contribution to a comprehensive vision of electronic record management was provided by the US Department of Defense standard entitled the Design Criteria Standard for Electronic Records Management Software Applications (DOD 5015.2 STD). PLANETS45, Preservation and Long-term Access through Networked Services, was a 4-year project co-funded by the European Union under the Sixth Framework Programme to address core digital preservation challenges. The primary goal for Planets was to build practical services and tools to help ensure long-term access to digital cultural and scientific assets. Planets started on 1st June 2006. The outcomes of the project were transferred to the Open Preservation Foundation46. The already mentioned OAIS standard published by both the Consultative Committee for Space Data Systems (CCSDS) and as ISO14721 has been highly influential in the development of digital preservation. As a reference model it provides a common basis for aligning disparate practices in diverse institutional settings. A range of standards have emerged around and related to OAIS, including PREMIS (for preservation metadata), ISO16363 (for certification) and PAIMAS (for exchange between Producers and Archives). Since OAIS was initially proposed the digital preservation community has grown tremendously in absolute numbers and in diversity. OAIS adoption has expanded far

44

InterPARES http://www.interpares.org, last accessed February 2019. Planets EU project http://www.planets-project.eu, last accessed February 2019. 46 Open Preservation Foundation http://openpreservation.org, last accessed February 2019. 45

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1 e-Health: Background, Today’s Implementation and Future Trends

beyond the space data community to include cultural heritage, research data centres, commerce, industry and government. The digital preservation community has a responsibility to keep the standard alive and relevant. The ISO review of the OAIS standard in 2017 offered a chance for a cooperative, transparent review process. It also creates an opportunity for further community building around OAIS and related initiatives. The efforts of the OAIS community focus on the development of an information platform around these common vocabularies, concepts, functions, and standards to cultivate a common view on the state of digital curation and preservation. On the occasion of the World Wide Web conference held in New York City in 2004 a specific session was devoted to digital preservation; experts coming from IBM, National Archive and Record Administration, Keio and other universities and institutions outlined the state of the art of this relevant sector of technology deeply influencing our legacy to future generations. In 2006 a similar session, hosted by a Health Institution, was held in Asolo47 (Veneto Region, Italy) with the specific aim of dealing with digital preservation of medical folders. Finally, it is very important that research into digital preservation be carried out by strong interdisciplinary groups, since this should guarantee that an effective approach to a problem that concerns the foundations of the digital era is defined.

1.8

In the Clouds

The cloud represents a new model for the deployment of computing resources by providing on-demand access to computing power. Cloud computing48 in all its forms is one of the most dynamic areas of technology today49. The market for these services is increasing by a double digit annual percentage rate. A short list of keywords associated to cloud computing is: SaaS; PaaS; IaaS; On-demand Self Service; Reserve Pooling; Rapid Elasticity; Measured Service; Software as a Service; Platform as a Service; Infrastructure as a Service.

E.g. The International Expert Meeting “Conservare il digitale”, held in Asolo on 29 September 2006. The report, entitled Long-Term Digital Preservation: An International Focus (see http://www. ndk.cz/dokumenty/asolo_memorandum.pdf/download), was created in order to provide some guidelines and suggestions on this topic.—in addition http://www.digitalpreservationeurope.eu/, last accessed February 2019. 48 Martin Gilje Jaatun, Gansen Zhao, Chunming Rong (edited by) (2009), Cloud Computing, ISBN 978-3-642-10665-1, Springer. 49 According to Gartner, IT spending is moving from traditional hardware and software to cloud computing, Charles Babcock, Gartner Sees $1 Trillion Shift in IT Spending to Cloud, InformationWeek (July 25, 2016), http://www.informationweek.com/cloud/infrastructure-as-a-ser vice/gartner-sees-$1-trillion-shift-in-it-spending-to-cloud/d/d-id/1326372, last accessed February 2019. 47

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If we refer to the definition of Cloud Computing provided by NIST50, National Institute of Standards and Technology, “Cloud computing is a model for enabling ubiquitous, convenient, on-demand network access to a shared pool of configurable computing resources (e.g., networks, servers, storage, applications, and services) that can be rapidly provisioned and released with minimal management effort or service provider interaction. This cloud model is composed of five essential characteristics, three service models, and four deployment models.” The five essential characteristics of cloud computing as identified by NIST are: 1. On-demand self-service. A consumer can unilaterally provision computing capabilities, such as server time and network storage, as needed automatically without requiring human interaction with each service provider. 2. Broad network access. Capabilities are available over the network and accessed through standard mechanisms that promote use by heterogeneous thin or thick client platforms (e.g., mobile phones, tablets, laptops, and workstations). 3. Resource pooling. The provider’s computing resources are pooled to serve multiple consumers using a multi-tenant model, with different physical and virtual resources dynamically assigned and reassigned according to consumer demand. There is a sense of location independence in that the customer generally has no control or knowledge over the exact location of the provided resources but may be able to specify location at a higher level of abstraction (e.g., country, state, or datacentre). Examples of resources include storage, processing, memory, and network bandwidth. 4. Rapid elasticity. Capabilities can be elastically provisioned and released, in some cases automatically, to scale rapidly outward and inward commensurate with demand. To the consumer, the capabilities available for provisioning often appear to be unlimited and can be appropriated in any quantity at any time. 5. Measured service. Cloud systems automatically control and optimize resource use by leveraging a metering capability51 at some level of abstraction appropriate to the type of service (e.g., storage, processing, bandwidth, and active user accounts). Resource usage can be monitored, controlled, and reported, providing transparency for both the provider and consumer of the utilized service. The concept of the cloud is, thus, tied to the transferring of responsibilities from one party to another. Still referring to the NIST definition, the three service models, as already mentioned, are:

50

Peter Mell, Timothy Grance (2011) The NIST Definition of Cloud Computing https://csrc.nist. gov/publications/detail/sp/800-145/final, last accessed February 2019. 51 Typically this is done on a pay-per-use or charge-per-use basis.

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1 e-Health: Background, Today’s Implementation and Future Trends

(a) Software as a Service (SaaS). The capability provided to the consumer is to use the provider’s applications running on a cloud infrastructure52. The applications are accessible from various client devices through either a thin client interface, such as a web browser (e.g., web-based email), or a program interface. The consumer does not manage or control the underlying cloud infrastructure including network, servers, operating systems, storage, or even individual application capabilities, with the possible exception of limited user-specific application configuration settings. (b) Platform as a Service (PaaS). The capability provided to the consumer is to deploy onto the cloud infrastructure consumer-created or acquired applications created using programming languages, libraries, services, and tools supported by the provider53. The consumer does not manage or control the underlying cloud infrastructure including network, servers, operating systems, or storage, but has control over the deployed applications and possibly configuration settings for the application-hosting environment. (c) Infrastructure as a Service (IaaS). The capability provided to the consumer is to provision processing, storage, networks, and other fundamental computing resources where the consumer is able to deploy and run arbitrary software, which can include operating systems and applications. The consumer does not manage or control the underlying cloud infrastructure but has control over operating systems, storage, and deployed applications; and possibly limited control of select networking components (e.g., host firewalls). Since the re-discovery of the network as a powerful means enabling new approaches and solutions in the field of computing. Early in the 1990s after the first approach to the world wide web it was the time of software as a service mainly applied to downloadable applications running on clients with a pay per use formula; another approach tightly connected with Java environment was net-computing, based on the paradigm of dummy portable computers connected with the Internet in order to download licensed applications every time they are switched on, saving outputs remotely on the Internet. Unfortunately, at that time network bandwidth wasn’t enough to enable these approaches world-wide. Super-calculus centres and important network nodes were looking for additional business to balance the lost one of super-calculus services and remote terminals service provision; some of them found as an interesting opportunity Internet access provision, email service, web hosting and, later on, cloud computing. Some of these A cloud infrastructure is the collection of hardware and software that enables the five essential characteristics of cloud-computing. The cloud infrastructure can be viewed as containing both a physical layer and an abstraction layer. The physical layer consists of the hardware resources that are necessary to support the cloud services being provided, and typically includes server, storage and network components. The abstraction layer consists of the software deployed across the physical layer, which manifests the essential cloud characteristics. Conceptually the abstraction layer sits above the physical layer. 53 This capability does not necessarily preclude the use of compatible programming languages, libraries, services, and tools from other sources. 52

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opportunities were based on applications running on remote servers, some on downloaded clients; some were basically data hosting. Some authors consider cloud computing as a new term to describe an already existent typology of service; other authors initially considered it like a “business” upgrade of the use of NAS (Network Access Servers). NAS characterised a true revolution in the world of computing, enabling network access from any location around the world to our file system exactly as it physically was within our premises. No more telnet or ftp transfer of needed files or even web publishing of file directories. A typical drawback was, it already happened in self-managed web servers; the significant duty to manage and protect data servers, in addition to this the different pace of data generation between company data and web data reinforced the need to ensure an easy scalability of storing devices. Cloud computing presented itself as the optimal solution to these problems. Availability of data storing as much as needed time to time, system and data management, backup, and protection all in charge to a professional team, and a basic pay per use policy. One of the major concerns in choosing cloud solutions was about security and privacy54. These specific concerns were often due to the location of the server farm and the specific laws and regulations concerning that equipment and its data asset. Sensitive data and privacy issues are managed in different ways in accordance with local legislation. Nowadays countries are including under their local legislation data regarding their citizens wherever the server storing them may be. Before moving the focus to the specific use in the Health sector we will consider the main deployment models used in cloud computing as commonly described. (a) Private cloud. The cloud infrastructure is provisioned for exclusive use by a single organization (e.g. corporation) comprising multiple consumers (e.g., business units). They are defined by privacy settings and management responsibilities, not by location or ownership. It may be owned, managed, and operated by the organization, a third party, or some combination of them, and it may exist on or off premises. When a business unit requests a custom deployment, the IT department pulls resources from its physical systems, virtualizes them, and locks them down as part of a virtual machine (VM). If more resources are needed, the IT department can either buy new on-site hardware, or rent the infrastructure from a vendor. So long as that hardware is solely dedicated and managed by the IT Dept., it’s still a private cloud—even if it’s physically located somewhere else. Private clouds are the choice of companies who want to make IT resources available on-demand, but don’t want to or can’t move to the public cloud because of security policies, budgets, compliance requirements, or regulations. This is often the case of healthcare and financial service industries; they use encryption protocols and firewalls to secure their IT systems, but private clouds, 54

Paul M. Schwartz, Information Privacy in the Cloud, 161 Penn. L. Rev. 1623, 1633 (2013) and Think Cloud Compliance Privacy and Security Compliance in the Health Care Cloud (2017) Microsoft Corporation https://www.microsoft.com/TrustCenter/Compliance, last accessed February 2019.

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1 e-Health: Background, Today’s Implementation and Future Trends

compared to public clouds, add an extra level of security because access is limited. (b) Community cloud. The cloud infrastructure is provisioned for exclusive use by a specific community of consumers from organizations that have shared concerns (e.g., mission, security requirements, policy, and compliance considerations). It may be owned, managed, and operated by one or more of the organizations in the community, a third party, or some combination of them, and it may exist on or off premises. (c) Public cloud. The cloud infrastructure is provisioned for open use by the general public. It may be owned, managed, and operated by a business, academic, or government organization, or some combination of them. It exists on the premises of the cloud provider. It’s a straightforward way to scale out workloads that experience unexpected demand fluctuations. The logic of the public cloud is similar to that which is at the base of household utilities; homeowners and tenants do not necessarily possess the well of water that feeds their pipes; they do not manage the power plant that generates the electricity that powers their appliances; they do not need to set up and sign the contract to extract the gas that heats their home. These homeowners and tenants simply sign a contract, use the resources and pay for what is used periodically. Public cloud users are charged based on pay-as-you-go models, an agreement that gives users the right to access resources or services when needed. Today’s public clouds aren’t usually deployed as a standalone infrastructure solution, but rather as part of a heterogeneous mix of environments that leads to higher security and performance; lower cost; and a wider availability of infrastructure, services, and applications. (d) Hybrid cloud. The cloud infrastructure is a composition of two or more distinct cloud infrastructures (private, community, or public); while the public and private cloud environments that make up a hybrid cloud remain unique and separate entities, migrating between them is facilitated by encrypted application programming interfaces (APIs) that help transmit resources and workloads (e.g., cloud bursting for load balancing between clouds). The hybrid separate/ connected architecture allows enterprises to run critical workloads in the private cloud and address the less sensitive workloads in the public cloud. Thanks to this hybrid architecture enterprises can pull resources from either environment as desired. Such an arrangement minimizes data exposure and allows enterprises to customize a scalable, flexible, and secure portfolio of IT resources and services.

1.8.1

Health in the Clouds

The above synthetic introduction to cloud computing leads to the conclusion that a shift to cloud technologies in health care, thanks to Cloud Service Providers (CSPs), offers great promises. Among the others these include increasing administrative efficiency, furthering patient-centric health care, and, if properly organised and tagged, enabling fruitful data-driven research. Moreover, the use of the cloud can

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free healthcare institutions from the task of updating their software to comply with changes in national regulations55 and enhance privacy56 and security regarding Protected Health Information (PHI) by permitting health care organizations to access already mature expertise and investment in these areas without starting from scratch on their own. To summarise, the cloud may be seen as a solution that permits a health care organization to focus on its core competency in medicine and to assign to computing companies the duty to secure and operate its networked computing environment. Of course, as we all know privacy is a key issue in medical data; privacy in this field reaches the top requirements, protecting medical information even from the patient him/herself. Thus, is privacy and security enough on clouds? From the potential expertise and specific investments, probably the reply is yes; the concern originally arose because the natural behaviour of companies and institutions looks at the protection of key assets as an in-house task, taking the full responsibility for potential data leaks. The point is in some way similar to “family gold and jewels”: is it safer to hide them in the sugar box or in the small safe behind grandmother’s portrait or take them to the caveau of a big bank? Yes, I know it doesn’t represent a real comparable case but it provides the “flavour”. Let’s avoid talking about the sugar box, the first place checked by petty criminals; if we compare the other two potential solutions we must take into account pros and cons. The small family safe can be detached from the wall or through time became easy to open; we know how lockers and doors are aging, forcing owners to renew and update technical solutions. The caveau of the big bank is designed and managed care of professional profiles in the field of security; it enjoys the latest solutions and 24/7 surveillance; the potential concern is due to the amount of valuable assets hosted inside that may attract highly skilled thieves properly equipped and assisted. So, which is the best choice? There is no general answer, it depends on the specific case, size of the organisation, internal skills, overall costs, risk analysis and mitigation plans, sometimes even insurance policies. In addition to PHI leaks and hacking, some issues focus on personal PHI access through a CSP by request of law enforcement agencies or national security. Trying to recap the main factors that have driven adoption of cloud solutions for health care we can start from the opportunity to increase efficiency and lower administrative costs in health care. Cloud permits an organization to purchase only the amount of computing resources that it requires. Health institutions can free up resources by only paying for computing resources they use, as with a utility company. As we already considered, the use of cloud services can enhance privacy

55

E.g. HIPAA in the US or EU privacy directives. This specific benefit is possible when cloud service is in charge to third parties providing public, community or hybrid cloud service to multiple healthcare institutions. 56 Institute of Medicine, Beyond the HIPAA Privacy Rule 19 (2009). Joe Kelly, Challenges in Law Firm HIPAA Compliance, Law360 (Oct. 23, 2015).

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and security. It does so transferring the duty and responsibility to operate and secure its networked environment to a cloud service provider (CSP), permitting a health care entity to focus on medicine and patients. We increasingly address the efforts toward patient-centric medicine and the customisation of treatments according to gender and patient. Interactions between patient and physicians have been improved by mobile devices, instant alerts, and digital health care reminders. Now if we consider the evolution of the health care system, many aspects are now digital. This process began some decades ago with a shift to electronic records. Starting from the 1990s digitalization has swept into patient records and digital medical test results, including X-rays, MRNs, and CT scans. As already outlined, the storage and sharing of this rich set of information requires high-capacity resources, such as those provided by cloud service providers. This approach permits health care entities to benefit from the massive economies of scale and allows them to “scale” up or down depending on their needs at different times. We already took into account the benefits in health care research depending on Big Data, as provided by electronic patient folders and mobile Apps, which requires significant computer resources. Research adopted an “information-based” model that started with existing data, examining it for interesting correlations and patterns. Physicians and health care experts are manipulating gigantic data sets, for which secure research platforms are essential. Big Data and advanced analytics systems could predict when a patient with chronic diseases is likely to get sick and be hospitalized, so, one can intervene before this happens. It will be possible to quickly collect similar case studies or identify incoming trends of diseases or identify connections between causes and specific locations or dangerous duties. Last but not less relevant, the advent and incredible diffusion of mobile APPs in the field of health and wellness perfectly match with cloud architecture, enabling a bi-directional flux of information between each single patient and the health platform.

1.9 1.9.1

Ethical Dimensions of the Information Society Ethics

The rapid advances in technology development and devices such as smart phones, tablets, smart wrist watches, bracelets, etc., equally create not only opportunities for inclusion and empowerment but also risks for the vulnerable groups; further entrenching and exasperating existing inequalities and the digital divide, inequitable access, lack of skills and digital literacy, safety and security concerns57, and the fact that new forms and modes of interactions and social transformations proliferated by

57

I.e. hacking, cyber-crimes, cyber bulling, privacy violations and unwanted solicitation, etc.

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ICT have behavioural and inter-generational impacts and consequences on society that are not as yet fully measured. The increasing role of information and knowledge as key determinants and contributors to human development served to emphasize the importance of ethical principles such as solidarity, inclusion and equity and the need for heightened urgency in addressing existing barriers like gender, age, access, cultural and linguistic diversity and human capacity, among the others, to participation in the global knowledge and information flows. Ethical issues of information society were taken into account since the definition of information society itself. “Equitable access to information and knowledge facilitated through the informed use of ICTs can create a vehicle for positive social transformation”—Dr Leyla Bartet, Chair of the Information Ethics Working Group of UNESCO’s Information for All Programme. “Failing to address the ethical issues of the information society will potentially expose societies to risks and losses that will delay attainment of the sustainable development goals”—Mr Pavan Duggal, Advocate at the Supreme Court of India, Head of Pavan Duggal Associates. The key importance of such aspects led to the creation of a specific term, “Infoethics”.

1.9.2

Information Ethics (Infoethics)

Information Ethics is one of the key topics promoted and investigated by UNESCO Information for All Programme. The international debate on information ethics (Infoethics) addresses the ethical, legal and societal aspects of the applications of information and communication technologies (ICTs). Ethical principles for knowledge societies derive from the Universal Declaration of Human Rights and include the right to freedom of expression, universal access to information, particularly that which is in the public domain, the right to education, the right to privacy and the right to participate in cultural life. One of the most challenging ethical issues is the inequity of access to ICT between countries, and between urban and rural communities within countries. Article 12, Universal Declaration of Human Rights, states, “No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks.” Article 21 deals with equal access to public service: “Everyone has the right to equal access to public service in his country.” Article 22 deals with the right to social security: “Everyone, as a member of society, has the right to social security and is entitled to realization, through national effort and international co-operation and in accordance with the organization and resources of each State, of the economic, social and cultural rights indispensable for his dignity and the free development of his personality.”

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Finally, the focus of Article 25 is health and well-being: “Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.” Both UNESCO Information For All Program (IFAP) and the World Summit on the Information Society (WSIS) express the will to build inclusive and developmentoriented Knowledge Societies where everyone can create, access, utilize and share information and knowledge, enabling individuals, communities and peoples to achieve their full potential in promoting their sustainable development and improving their quality of life. Along with the benefits of a digitally connected world come the threats of misuse and abuse. Already countries are building mechanisms to protect their people against these risks, for example to ensure the safety of children on the Internet or fight against fake news, but clearly a lot more needs to be done to address the ethical implications of the information society. This aspect is particularly critical when dealing with elderly people, often cheated58 “physically” by fake officers or people pretending to represent social security or investment funds. On the occasion of the Internet Governance Forum 2017 (IGF), held in Geneva, different sessions addressed the issues of Infoethics; among the others the session “Artificial Intelligence and Inclusion” put the focus on ethical issues in Artificial Intelligence (AI) and a growing need for a more diverse perspective regarding the policy issues and consequences of AI. We choose this session as an example because AI was back on stage in 2017 as a silver bullet to solve major problems. It was a common understanding that the developing world will be directly affected by the deployment of AI technologies and services. The panellists agreed on the necessity to study and forecast the potential impact that the development of Artificial Intelligence will have on inclusion in different areas such as health and wellbeing, education, low-resource communities, public safety and security, employment and workplace, and entertainment, media and journalism, among others. The first impact to be considered is the complex set of issues concerning the geographic divide between the Global North and the Global South when it comes to the development, design, and application of AI-based technologies. Second, the uneven impact of AI and related technologies on often marginalized communities, including youth, people in rural areas on with low socioeconomic status, ethnic and racial minorities, people with disabilities, girls and women, etc. Therefore, a new divide is emerging between those who are aware of their digital rights, including how they are regulated in their jurisdictions, and how to protect themselves against digital rights violation, and those who are unaware of what their

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Please refer to the volume e-Citizens: Being Human in the Digital Age: Security chapter.

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digital rights are and do not have resources, skills, means and capabilities to enforce these. We refer to this phenomenon as “digital rights divide”.

1.9.3

Ethical Issues

There are numerous ethical issues with regard to the use of ICTs in the field of health. The number and details of these ethical issues vary greatly. The differing levels of detail and length of time of discussion of the technologies cause this variation. Several recurring issues arise, notably those related to: • • • • •

privacy; data protection; intellectual property; security; ...

In addition to these, there are numerous ethical issues that are less obvious and currently not regulated. These include: • • • • • • • • • •

autonomy, freedom, agency; possibility of persuasion or coercion; responsibility, liability; the possibility of machine ethics; access, digital rights divides; power issues; consequences of technology for our view of humans; conceptual issues (e.g. notions of emotions, intelligence); links between ethics and integration of ethics into law; culturally different perceptions of ethics.

This non-comprehensive list shows that there are numerous ethical issues we can expect to arise. Hardly a day goes by without news items relating to the misuse or ethically problematic application of Information and Communication Technologies (ICTs). Recent high-profile examples of ethical issues and controversies arising from novel or widespread use of ICTs include: • Google Street View, which has led to debate worldwide; • Facebook, whose privacy and intellectual property policies have caused international concern; • The UK identity card, which caused considerable debate in the UK before being scrapped; • Apple, which refused to “open” the iPhone security to let the FBI investigate a terrorist’s attacks.

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It would be desirable to have a better understanding of new and emerging ICTs and their possible ethical consequences. This would allow early reactions to ethical issues and thereby might prevent problems and scandals.

1.9.4

Bioethical Aspects in e-Health and “m-Health”

The development of such technologies is rapid and growing, to the point that it is difficult to give an overview of the new technologies available. These are technologies that promote a strong innovation and open up new opportunities including the promotion of a healthy life in the users, facilitating the doctor/patient communication, the improvement of the efficiency of the healthcare system, speeding up the collection of data, the increase of access to healthcare, and more. At the same time the technologies have revealed some troubles on the ethical level, with respect to safety and efficacy, privacy, informed consent, dependence and technological vulnerabilities, self-management of health and lastly, as already pointed out, the technology gap. In light of the ethical analysis, some national bioethics committees59 provides some recommendations, with particular reference to the classification of the applications based on the risks, for the promotion of interdisciplinary research among computer scientists, engineers and doctors, along with ethicists, cognitive and social sciences, in the design, testing and evaluation of applications phases. These aspects are relevant for Internet applications but even more for APPs. APPs for many reasons may infringe upon ethical and privacy fundamentals; they ask to access personal data, are aware about the position of the users, activate on-board video cameras, collect wellness data, etc. Local authorities may stimulate companies to produce APPs devoted to healthcare and wellness having clearly in mind the issues related to the sphere of security profiles and privacy. More in general, different national authorities both in Europe and elsewhere agreed on “appropriate disclosure and transparent communication to APPs users at the time of activation of each APP”. In addition, specific attention must be paid to children and to the promotion of studies on the impact due to the use of the APPs, in particular on personal identity and relationships. The goal is to promote awareness of civil society with regard to the critical aspects associated to emerging applications for health, avoiding excessive forms of health consciousness and medicalization.

59

E.g. the Italian bioethics committee.

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e-Health and Privacy Issues

Having read the previous paragraphs we already know that in designing e-Health services we must take adequately into account privacy issues. The healthcare sector is probably the only one characterized by a layered management of privacy, including limitations to the owner of the information him/herself. This is very often one of the major bottlenecks in healthcare service provision, the risk of infringing on privacy rules and regulations. As clearly anticipated by a number of movies, stolen digital identities, digital desaparecidos, and other digital crimes are the nightmares of the cyber age. Privacy is a luxury in the information age. In the near future, it will be necessary to find a satisfactory equilibrium between privacy and the “open” systems enabled by ICT. Security is one of the key issues in e-Health, as is a robust disaster recovery plan. Citizens must feel comfortable and in a trust relationship when they access and use e-Health services. The traditional patient/physician trust relationship has to be guaranteed even on e-Health platforms. There are a number of regulations intended to improve health care data security. This is a side effect of the improvement of health care data access that has created new security risks, along with headaches for patients and practitioners. If we refer, for instance, to the US, the Health Insurance and Portability Act (HIPAA60), enacted in 1996, has caused a major crunch for the computer security industry. “The Administrative Simplification provisions of the Health Insurance Portability and Accountability Act of 1996 (HIPAA, Title II) required the Department of Health and Human Services (HHS) to establish national standards for electronic health care transactions and national identifiers for providers, health plans, and employers. It also addressed the security and privacy of health data. As the industry adopts these standards for the efficiency and effectiveness of the nation’s health care system will improve the use of electronic data interchange.61” Like many legislative initiatives HIPAA appears to be intended to reduce costs, in this case insurance-related health transactions for patients, but as it happens frequently, the overhead of compliance has the opposite effect. The major part of potential information violations could be more likely to occur through electronic data collection and consolidation62. We all know that privacy63 is an information age luxury, the more we use technology the more we are “visible”. Privacy it is not costless. The privacy rule component implemented by HIPAA addresses the use and disclosure of Protected Health Information (PHI) by health care plans, medical providers, and clearinghouses.

60

http://www.cms.hhs.gov/, last accessed February 2019. From the https://www.cms.gov/Regulations-and-Guidance/Administrative-Simplification/ HIPAA-ACA/index.html web page last accessed February 2019. 62 HIPAA Basics for Providers: Privacy, Security, and Breach Notification Rules, https://www.cms. gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/Downloads/ HIPAAPrivacyandSecurity.pdf, last accessed February 2019. 63 Please refer to the specific chapter on e-Citizen: Being Human in the Digital Age, Springer. 61

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The aim of the Privacy Rule, according to the U.S. Department of Health is, “The Privacy Rule applies to health plans, health care clearinghouses, and those health care providers who conduct electronically certain financial and administrative transactions that are subject to the transactions standards adopted by HHS64. The Privacy Rule requires covered entities to protect individuals’ health records and other identifiable health information by requiring appropriate safeguards to protect privacy, and by setting limits and conditions on the uses and disclosures that may be made of such information. The Privacy Rule also gives individuals certain rights with respect to their health information.”65 The key document related to the rule is the “Notice of Privacy Practices Patient Acknowledgement” form; we are already familiar with a number of such documents because of privacy issues in every field every time we transfer any personal data related with our identity. This form is usually one of the first documents we have to sign before receiving any medical attention from most health care providers. The usual purpose of this form is to attest that the patient (or guardian if the patient is a minor) has received proper information, usually printed in small on the same sheet of paper, regarding the use and disclosure of one’s health care information (internally and externally by the health service provider). The information may be provided to others beyond the medical practitioner’s office. Estimates66 in the U.S. indicate that as many as 150–400 individuals may have access to information collected in a patient’s medical folder. On the contrary, giving the consent to the privacy form can mean that close family members may not be able to get copies of the contents or summaries of the medical records, even if this information is essential in order to obtain treatment or reimbursement. The same problems may be faced even in the case of malpractice in similar medical cases.

1.10.1 The RFID Radio Technology, Ethics and Privacy In the near future more services provided by the Health platforms will take advantage of RFID or even IoT technologies. It seems wise to take into account related ethics and privacy issues. These in the case of IoT have already generated relevant criticism on the side of privacy protection. The Radio Frequency Identification (RFID) is a system that uses electromagnetic waves to automatically identify people or things. The system consists generally of a See 45 C.F.R. § 160.103 (definition of “covered entity”). U.S. Department of Health and Human Services, Office for civil rights. Summary of the HIPAA privacy rule. 66 Johns, M.I., HIPAA privacy and security: A practical course of action. Topics in health information management 22, 4 (May 2002) and Health Information Security and Privacy Collaboration Action and Implementation Manual https://www.healthit.gov/sites/default/files/pdf/privacy/pri vacy-and-security-guide.pdf, and https://www.ehnac.org/wp-content/uploads/2013/07/FI_Compli ance_Guidelines-08102012_Update.pdf, last accessed February 2019. 64 65

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tag (i.e. a label of a readable and sometimes writable electronic memory, as well as antennas) and a reader. The RFID tag can contain an identification code or even more information. The RFID readers are used to read the information in the tags. There are many solutions and applications based on RFID technology used in healthcare; think of the designed systems for hospitals employing the RFID tags to track blood bags or tools used in operating rooms, or to control systems that are able to remind the patient to take medication or special meals, as well as to collect clinical data in order to allow remote control of certain vital functions, namely the management of therapy and the administration of medicinal products67 with greater accuracy and security. Some of these applications also combine the use of RFID technology with the subcutaneous microchip implant techniques on individuals. With specific reference to the use of RFID systems for subcutaneous implant, in the general order of 9 March 2005, the Ombudsman stated that the inclusion of microchips carries the apparent sensitivity of the implications of this on individuals’ rights, the adoption of specific safeguards necessary68. In view of the potential risks arising from the use of these systems, for both the health of the subjects who undergo the implant and the security of personal data, the use of a subcutaneous microchip may be accepted only in exceptional cases69, for proven and justified needs for the protection of human health, in strict adherence to the principle of proportionality and in strict compliance with the patient’s dignity, subject to the other provisions of the national and European data protection legislation. Given these positive data of great interest for scientific and technological progress, we should highlight some of the emergent ethical problems70. It is important to reflect on these elements, certainly not with the aim of curbing this area of technological development, but rather to make it compatible with the protection of the rights, safety and well-being of users.

1.10.2 Medical Device or Fitness Tool? The explosion of digital devices and related APPs created a grey overlapping zone between “medical devices” and “Wellness or Fitness” devices. To properly consider and use such devices it is a paramount to clearly identify the two branches. A first essential element is the determination of criteria for the distinction of m-health

67

E.g. identification of customised packages of drugs created to fulfil single patient needs. Italian regulation issued on 9 March 2005, available on the Authority’s Internet site www. garanteprivacy.it, web documentary. 1109493. 69 E.g. it is used to mark specific areas of the patient body subject to regular check-ups. 70 It is a theme related bioethics, in some respects, to themes previously covered by the NBC. Cfr. Ethics, health and new information technologies, April 21, 2006; The identification of the human body: bioethical profiles of biometrics, November 26, 2010. 68

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applications that are within the family “medical devices” and applications not considered as “medical devices”. According to the general understanding a “medical device” means—any instrument, apparatus, appliance, software, material or other article, whether used alone or in combination, including the software intended by its manufacturer to be used specifically for diagnostic or therapeutic purposes. The device is intended, by the manufacturer, to be used by human beings for the purpose of: diagnosis, prevention, monitoring, treatment or alleviation of disease; diagnosis, monitoring, treatment, alleviation or compensation for an injury or handicap; investigation, replacement or modification of the anatomy or of a physiological process; control of conception, which does not achieve its principal intended action in or on the human body that is targeted by pharmacological or immunological means or metabolic means but whose function can be assisted by such means. This distinction is important because in the first case the applications in the health sector before being allowed on the market must comply with national or European regulations and certification requirements: the rules govern how you should use the devices, who can use them and what are the applications; Certification ensures security in the sense of non-hazardousness, but not effectiveness. In the second case—that is, when you exclude that the applications for health care “medical devices”—there is no specific regulation, but only the general national or European consumer protection. The European Community71 Directives regulate in a uniform manner all the countries of the European Union; the medical device industry sector transfers to the Competent Authority (CA) in each Member State the designation of Notified Bodies, which evaluates, monitors and verifies medical devices. The Notified Body is a public or private entity authorized, by the Competent Authority, to issue the “CE72” mark. Reference is made to the risk level of the device, according to a precise classification: Class I (low risk, e.g.: corrective glasses); Class IIa (e.g. Contact lenses); Class IIb (high or medium risk, e.g. X-ray equipment); Class III (high risk, e.g. coronary stents); active implantable devices’ risk is assigned to Class III (e.g.: pacemakers). If high-risk (as, e.g., it is in the case of contact with the cardiovascular or neurological system), the evaluation is entrusted to the Notified Body; if the device is classified low risk, the manufacturer identifies the presence/absence of the requirements for classification. This is probably the reason that led the market towards more applications that fall in the category of wellness and fitness, not classified as “medical devices”. What is clear today is that there is an extremely efficient control system due to the managers of the store or online headquarters of the Health APP sales. Nevertheless, these managers are not scientific bodies and have an interest in entering the health

71

Cf. Directive 93/42/EEC on medical devices, Directive 98/79/EC in vitro diagnostic medical devices, Directive 90/385/EEC on active implantable medical devices. Cf. Appendix. 72 A long time ago an almost identical mark appeared on some consumer products as the initials for China Export.

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market, but not to sell “medical devices” that would require the “developer” to accept very strict rules and conditions within the territory in which they are produced and to be published. This is a long process, burdensome and expensive, with its implications of legal responsibility. It tends, therefore, to go around presenting as simple way to perform a welfare check those that actually are real medical devices. It is therefore present an ambiguity in the supply of health applications. On one side Google and Apple are keeping a “distance” from the medical applications in the strict sense, but on the other side they both keep close to the health sector, delivering “healthcare/ wellness” applications on the market, without such apps being qualified as medical, even if they are increasingly numerous and increasingly related to medicine. In the field of information and communication technology dissemination, the prevailing trend in the evaluation of the APP on the health market is, in place of the expert assessment, the opinion of people who have downloaded and tried it. This is the evaluation criterion in this field, in which everything changes very quickly: what has a real impact is what users see as reliable, obtainable by the number of downloads and views expressed by the network. In this sense what drives users to install an app is not so much scientific validation but rather the approval rate in the network expressed by consumers. Very often, the lack or deficiency of an adequate scientific validation of applications emerges with reference to both security and effectiveness. While testing of medical devices is subject to very precise regulation, there is not a regulatory requirement for the testing of APPs not classified as medical devices. It is ethically desirable for developers when offering a prototype that they submit it to an official centre for validation or evaluation of the risks and benefits. It is to be stressed that the general information related to health and well-being must be accurate and reliable, because on that critical decisions can be based with direct reference to the health of the subject. Some studies have shown that only few health applications have been adequately tested73. Some commercial applications may endanger the patient’s health and are potentially dangerous for clinical use. In a particular way, e.g. some app for the dosage of opioid, the prediction of the cardio-vascular risk or the diagnosis of melanoma have proved inaccurate74.

73

G. Eysenbach, eHealth and Mobile Medical Apps: A Framework to assess risk and Promote safer use, “Journal of Medical Internet Research”, Sep. 2014, 16 (9), e210; S. Misra, T.L. Lewis, T.D. Aungst, Medical application use and the need for Further Research and assessment in clinical practice: Creation and integration of standards for best practices to alleviate poor application design, “JAMA Dermatol”, Jun 2013, 149 (6), pp. 661–662. 74 On these issues, there is already an ongoing broad debate: M. McCartney, How do we know Whether medical apps work?, “BMJ”, 2013, 346, pp. 181; A.W. Buijink, B.J. Visser, L. Marshall, Medical apps for smartphones: lack of evidence Undermines quality and safety, “Evid. Based Med.”, 2013 Jun, 18 (3), pp. 90–92; F. Haffey, R.R. Brady, S. Maxwell, A comparison of the reliability of smartphone apps for opioid conversion, “Drug Saf”, February 2013, 36 (2), 111–117; J.A. Wolf, J.F. Moreau, O. Akilov, T. Patton, J. C. Inglese, J. Ho, L.K. Ferris, Diagnostic inaccuracy of smartphone applications for melanoma detection, “JAMA Dermatol”, April 2013, 149 (4), pp. 422–426. The problem that remains open in practice relates to the exponential speed of design of new apps, making difficult the realization of the benefit/risk assessment. Medical apps are

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In this regard—given the lack of adequate testing—it may be necessary to verify the variables that can affect the risk of using the app, by distinguishing the internal risks of the APP (e.g. Display) and external risks (of the context of use). The internal risks could be reduced with adequate control, external risks and context with appropriate education of the doctors (in case of medical use) and/or operators, to make them aware of the use. However, it was noted that some health-related applications with clinical use do not provide training for a physician who will use them and do not involve physicians in the design and development of the process75. Often the designer has high technological knowledge, but a lack of medical expertise; the physician, in turn, knows the application field, but little about technology; the user, finally, tends to rely on technology, often without being adequately informed about safe limits and possible risks.

1.10.3 The Use of Data and Privacy The considerable amount of data collected and used by users (data on health and medical data, personal data, biometric data, social data, environmental data) and the ubiquity and continuity of the process of communication in the so-called “Mobile ecosystem” (including providers, manufacturers, vendors and users) raise precise and relevant issues concerning privacy76. A huge amount of complex, heterogeneous data, is generated by healthcare applications. Such data are quickly and continuously accumulated through the monitoring of physiological parameters that are collected, studied, interpreted and correlated with algorithmic models. This “explosion” of information raises some problems regarding our privacy in relation to its use by parties unrelated to the therapeutic relationship, or for non-therapeutic purposes. The problem of “third party request” is becoming increasingly crucial in the use of the network. Any information may be relevant and become discriminatory when connected to others and used to build up “profiles” of individual users77. Through

not designed to operate in a particular device, but it can work with different operating systems: Given the versatility of operating systems (current and future), we cannot test them all for safety. 75 E.g. some applications for asthma, food diary for diabetic patients, “my recovery” applied to preparation and management of interventions for rehabilitation after surgery; use of games for panic attack control; home HIV tests, sexual diseases, Streptococcus. 76 In the field of the processing of sensitive data: Directive 95/46/EC on the protection of individuals with regard to the processing of personal data and on the free movement of such data; Directive 2002/58/EC concerning the processing of personal data and the protection of privacy in the electronic communications sector. 77 As the Italian National Bioethic Committee stressed in the document “L’identificazione del corpo umano: Profili bioetici della biometría” (“Identification of the human body: Bioethical profiles of biometrics”)

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the collection of health data, or even just for applying for health information, relevant elements may emerge for the pharmaceutical market, medical benefits, insurance and labour. Without adequate regulation and a rigid system of limitations and controls78 it is unlikely that there will be no serious phenomena, in some areas, like marginalization and discrimination, linked to the profiling system. How to prevent, for example, someone who visits the websites or purchases APPs on heart disease for being classified as a possible cardiopathic, and then this information going to the business sector or to the insurance market? These phenomena become even more serious, to the extent that they occur without the person’s awareness, making him unable to protect and defend his own rights. The problem does not only relate to the health and medical data, but also the data derived from APPs for health and lifestyle. They are termed “raw” data; even if they are not directly medical data, combined with other data, they may have a medical relevance and allow the definition of a health profile of the user, all this with reference to health and to the connected risks79. Care must be taken because, although they are health data, they are currently considered as personal data and therefore with a lower80 level of protection. In addition, it is evident the concern that the use of APPs leads to a maximization of the use of medical/personal data without proper awareness of it, with indifference or even with playfulness especially among young people. There are, therefore, the following problematic elements related to privacy very often part of regulations and recommendations: (a) lack of transparent information, before downloading the application data, on what and how much data the potential research studies (for scientific, epidemiological or commercial purposes, or otherwise purposes that are not necessarily in the interest of the subject) require; on those who will use and manage the data (the data controllers); on where the data are stored (data repository); on if personal data will be combined with other data from which health information is “reasonably” inferable; (b) the absence of information on the possibility of revocation of consent, and rectification and destruction/erasure of the data; (c) absence of information on the risk of identification, when partial anonymization is not possible or guaranteed81; (d) lack of information on the risks of data access by third parties (insurance companies, employers, etc.) and the possibility that those who maintain the

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e.g. through the clear separation between search engines and search sites. E.g. If you collect data only once to count the number of steps, such data will not lead to any reasonable inference. They are not “official” medical data and are not correlated with other data, therefore not relevant for searches. But if they are systematically collected and combined with other data (e.g. Sexual difference, age, habits) they can be given as a scope for the search. 80 Known as art. 29 Working Party. 81 It may provide user authentication systems based on biometrics, tokens, log-tracking techniques, similar to the banking sector (Digipass, SMS authentication). 79

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data may sell it to create databases for research purposes (commercial/scientific). In some cases, it is stated that the data will be used for commercial purposes, but often in semi-hidden sections of the APP not readily available to those without adequate computer skills. In some cases, this information is relegated to external sites and therefore is not present within the specific APP. An interesting aspect that is emerging in the ethical debate is that the same design of the applications may be based on the requirement of “privacy by design” as a condition of the very legitimacy of the APP. It is an expression that indicates the possibility that the problem of privacy is already considered at the time of the application design, e.g. by building applications that have a priori determined the limits and format for accessing personal data, an opportunity to have full control over who has access with reference to both the manufacturers and users, these applications only request for the data necessary for the operation of the APP and foresee the revocation of data on request82.

1.10.4 Informed Consent and the Warsaw Declaration European and national players, although well aware of the difficulty of making an informed consent, and to protect the privacy of users in this new field of application, however, hope that they will be able to give a proper disclosure and transparent communication at the time of use of APPs so as to achieve an informed consent. But, how do we brief the patient on issues relating to security and privacy? Again, we will mainly focus on APPs, but the same applies to web services. The Warsaw Declaration83 on “appification of society” (September, 2013), in the context of the meeting of Data Protection and Privacy Commissioners, 35th annual international conference, outlined the following situation: “Apps are making many parts of our day-to-day lives more easy and more fun. At the same time, apps also collect large amounts of personal data. This allows for continuous digital monitoring, often without the users being aware that this happens and what their data are used for.”; this brought about the so-called “Granular consent”84, indicating that the consent must be given for each type of information. Quoting the period of the declaration, “Providers of operating systems should bear responsibility for their platforms. Admittedly, these actors are increasingly taking up their responsibility by offering

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Art. 17 Directive 95/46/EU, art. 14.3 Directive 1999/5/EC and art. 23 of the Proposal for the Regulation on data protection “the controller Shall implement appropriate technical and organizational measures and procedures in such a way That the processing will (...) Ensure the protection of the rights of the data subject”. 83 Warsaw Declaration https://edps.europa.eu/sites/edp/files/publication/13-09-24_declaration_ appification_society_en.pdf, last accessed February 2019. 84 Cf. Paragraph 6: “individuals can finely (Specifically) control Which personal data processing functions are offered by the APP they want to activate”.

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general privacy settings on mobile devices.” However, these are insufficiently granular to offer full user control for all meaningful aspects of individual data collection. The subject should therefore express a different consensus: a general consensus to download the APP and a separate consent for the specific purpose of the APP or for each specific purpose if multiple. Each type of consent should be preceded by a specific85 clear and easy to understand information set. This solution has several problematic elements. First there is a sizable amount of digital information, be displayable small typeset on smartphones; sometimes we lack the real alternative to dissent or change the selection. Already the concern has been raised of informed consent on the screen and not on paper, this leads to click immediately without sufficient time for an informed choice and without the ability to ascertain the voluntariness. In addition, the multiplication of the consensus may lead to user irritation or often to his/her only agreeing to speed up the procedure, without, here too, adequate awareness, making meaningless the so-called informed86 consent. The need to inform users and receive their consent becomes even more complex when APPs are used by children, as happens with great frequency, both medical and non-medical APPs. So, what are the precautions to be considered before a teenager or large minor discharges a health APP? Obtaining informed consent in the medical field requires a reciprocal and symmetrical communication. Communication is symmetric when individuals are equally strong in mutual interaction and when the positions of those who give the information and who receive it took place in recognition of their autonomy. If that seems just feasible to insure an adult in using of medical APP, which lacks the relational context, it is even less so for teenagers whose elements of competence, such as the ability to decide, the reasoning behind the decisions, the prediction of outcomes, involve a balance between these elements that will only gradually set at a developmental age. It must also consider that it appears legally questionable that such a consensus can still be given by the child alone without the supervision of relatives: these are events

“This line of thinking based on the interpretation of paragraph 107 of the Explanatory Memorandum of the Recommendation N 97) 5 on the protection of medical data: “But even in cases where his/her consent is not required—That is, When the collection and processing of medical data follow an obligation under the law or under a contract, are provided for or Authorised by law, or When the consent requirement is dispensed with—the recommendation That Provides the data subject is Entitled to relevant information”. Also Article 29 Working Party has recently published an “On APPs on smart devices” document, which emphasizes the need to inform in a clear and unambiguous manner how they have used the data (data type, purpose, period) before the installation the APP. The right to information is also expressed in art. 10 Directive 95/46/EC; art. 5.3 of the ePrivacy Directive 2002/58/EC. 86 E. Mantovani, P. Quinn, B. Guihen, A. Habbig, P. Heart, eHealth to mHealth—A Journey Precariously Dependent Upon APPs?, “European Journal of ePractice”, vol. 20, November 2013; M. Parker, Ethical considerations related to the mobile technology use in medical research, “Journal of Mobile Technology in Medicine”, 2012, 1, 3, pp. 50–52; M.J. Siòlberman, L. Clark, M-Health: the union of technology and healthcare regulations, Greenbranch Publishing, 2012. 85

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that concern his health, that must necessarily fall in the scope of the responsibility of the parents or legal representative. If the risks associated with these medical devices are consciously accepted by an adult, the same cannot be so with a minor, where his best interests in the sphere of treatment still are a traditional patient-physician relationship. Especially as the most downloaded APPs by users, as already mentioned, ask without permission to access a large amount of data, avoiding to adequately explain the purposes for which that information would be used, including what personal data that will be collected and their use. However, it is difficult to know if the use of a medical APP is done by an adult or a minor. And this is a problem that even in the field of ICT should be noted: you have to think about specific additional guarantees for minors, identifying, for example, requirements and information mechanisms to check online the age of a buyer of an application for health. As a consequence, follows the need to offer, for children, simple, concise information; all this includes the provision of educational references which encourage consciousness of the problems, expressed with a suitable language. The education of children, as active users of these new technologies, is particularly urgent and important on the bioethical side: an education that strengthens self-defence tools of young people in the use of technology. It should also be the responsibility of the parents, when they buy mobile devices for their children, to activate control systems (parental control) disabling access to the APPs. You might also wish that the medical APP which contains data and treatment aimed to minors has been designed, supported and endorsed by scientific societies or specialized health care institutions in the diagnosis and paediatric care. The market offer itself should be distinct in relation to the recipients (adults or minors/children). In relation to the categories of persons to whom the personal data of patients may be communicated by the health care facility, it is noted that in the standard contract prepared by the company, to be subject to the signing of the health facilities that make use of the RMS87 provision and in the model informative annex states that, in addition to doctors’ responsible for medical care related to the system “. . . may, among others, have access to this data any other health professional involved in ensuring continuity of care or in determining the best possible action line, unless otherwise indicated by the patient.”

87

RMS—Remote Medical Services.

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1.10.5 EU General Data Protection Regulation (GDPR) After 4 years of preparation and debate the GDPR was finally approved by the EU Parliament on 14 April 2016. It entered in force 20 days after its publication in the EU Official Journal and has direct application in all members states 2 years after this date. Enforcement date: 25 May 2018—at which time those organizations in non-compliance will face heavy fines. The EU General Data Protection Regulation (GDPR) replaces the Data Protection Directive 95/46/EC and was designed to harmonize data privacy laws across Europe, to protect and empower all EU citizens with data privacy and to reshape the way organizations across the region approach data privacy. The aim of the GDPR is to protect all EU citizens from privacy and data breaches in an increasingly data-driven world that is vastly different from the time in which the 1995 directive was established. Although the key principles of data privacy still hold true from the previous directive, many changes have been proposed to the regulatory policies; the key points of the GDPR as well as information on the impacts it will have on business are summarized below. Taking into account the main problems concerning personal data in the recent past the increased territorial scope (extra-territorial applicability) is one of the most relevant improvements, as it applies to all companies processing the personal data of data subjects residing in the Union, regardless of the company’s location. Previously, territorial applicability of the directive was ambiguous and referred to data process ‘in context of an establishment’. This topic has resulted in a number of high profile court cases. GPDR makes its applicability very clear—it will apply to the processing of personal data by controllers and processors in the EU, regardless of whether the processing takes place in the EU or not. The GDPR will also apply to the processing of personal data of data subjects in the EU by a controller or processor not established in the EU, where the activities relate to: offering goods or services to EU citizens (irrespective of whether payment is required) and the monitoring of behaviour that takes place within the EU. Non-EU businesses processing the data of EU citizens will also have to appoint a representative in the EU. Additional modifications are related to consent provision. The conditions for consent have been strengthened, and companies will no longer be able to use long illegible terms and conditions full of legalese, as the request for consent must be given in an intelligible and easily accessible form, with the purpose for data processing attached to that consent. Consent must be clear and distinguishable from other matters and provided in an intelligible and easily accessible form, using clear and plain language. As already pointed out in previous paragraphs thanks to this new regulation it must be as easy to withdraw consent as it is to give it. The GDPR contains relevant news on the side of the rights of Data Subject. Under the GDPR, breach notification will become mandatory in all member states where a data breach is likely to “result in a risk for the rights and freedoms of individuals”. This must be done within 72 hours of first having become aware of the breach. Data processors will also be required to notify their customers, the controllers, “without undue delay” after first becoming aware of a data breach.

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Another important enhancement concerning data subjects is the right to access. This is the right for data subjects to obtain from the data controller confirmation as to whether or not personal data concerning them is being processed, where and for what purpose. Further, the controller shall provide a copy of the personal data, free of charge, in an electronic format. This change is a dramatic shift to data transparency and empowerment of data subjects. Following the actual trend of digital obsolescence often associated to the right to disconnect88, in its ruling of 13 May 2014, the EU Court said: “Individuals have the right—under certain conditions—to ask search engines to remove links with personal information about them. This applies where the information is inaccurate, inadequate, irrelevant or excessive for the purpose of the data processing.” The new directive endorsed this decision as the Right to be Forgotten, also known as Data Erasure. The right to be forgotten entitles the data subject to have the data controller erase his/her personal data, cease further dissemination of the data, and potentially have third parties halt processing of the data. The conditions for erasure, as outlined in article 17, include the data no longer being relevant to original purposes for processing, or a data subject’s withdrawing consent. It should also be noted that this right requires controllers to compare the subject’s rights to “the public interest in the availability of the data” when considering such requests. An additional key topic was included in the new directive, Privacy by design as a concept has existed for years now, but it is only just becoming part of a legal requirement with the GDPR. At its core, privacy by design calls for the inclusion of data protection from the onset of the designing of systems, rather than as an addition. More specifically—“The controller shall implement appropriate technical and organisational measures in an effective way in order to meet the requirements of this Regulation and protect the rights of data subjects’. Article 23 calls for controllers to hold and process only the data absolutely necessary for the completion of its duties (data minimisation), as well as limit the access to personal data to those needing to act out the processing.

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A recent survey of 2013–201789 notes that on the market there are about 97,000 apps, distributed on different platforms; about 70% of these are related to health and well-being of the consumer, while 30% is dedicated to the consultation and patient monitoring, diagnostic imaging, drug information, etc.

88

Right to disconnect known in France as Myriam El Khomri Law, the name of the French Labor Minister that presented the proposal to the Parliament. https://www.bbc.com/news/world-europe38479439, last accessed February 2019. 89 Research2Guidance (2013), “The mobile health global market report 2013–2017: the commercialisation of mHealth apps” (Vol. 3).

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The same source of stats90 predicted that within the end of 2016 the number of patients monitored with such technology will be 3 million and that by 2017 about 3.7 billion91 people in the world will have on their smartphones applications devoted to healthcare. They estimated that in 2018 the value of m-Health will be 33 billion euros worldwide and will reach 58 billion euros in 2020. We moved from the “Internet 2.0”, the Internet communication through the proliferation of social networks, to the “Internet 3.0” and the Internet “so what”, “something” that will be an integral part of our lives: “something you cannot be without”92. In this step the body and, consequently, the health will be subject to a myriad of potential points of observation and monitoring of the movements, sounds, lights, electric potential, temperature, humidity, location, voice, face, heartbeat rate, changes of heat and electricity of the skin, the blood volume flow, the twitch of muscles93. Over the next 10 years at least 100,000 applications in the category “Health & Fitness” will be available on the market with steady growth. The transformative potential of this new technology in a growing market will always have more implications at different levels, the rapid evolution of which we can now only guess some developments in economic, organizational (for “service delivery”) and on the cultural side both international and domestic. On one side the foreseeable increase in health care costs due to both the increase of the elderly population and multifactorial chronic diseases and the personalization of health94 demands will require more and more the use of technologically innovative organization schemes, in order to re-design services, and for multi-professional interventions, multidisciplinary, at different times and places. On the other side we talk about the increasing active participation of citizens, more and more involved and interested in the management of their own health and well-being and committed to seeking, care of information and communication technologies (ICT), “excellence” in services. e-Health and, even more, m-Health fit into this context of technological evolution, the transition from replacement technology to control technology and health transformation, giving rise to a greater accessibility (even economic), efficiency of services and a growing involvement of the subject/user; with the use of mobile devices or sensors for the collection of clinical data, s/he becomes more and more the protagonist of her/his own health. Firstly, in fact, the user is active in the search for relevant information about his health. Secondly, the user is a source of valuable data that help to feed the informational pool to draw from in order to respond to his/her own questions. It is typical, since the web 2.0, that the user is a prosumer, producerconsumer of resources. In such a case, he is prosumer of information.

Research2Guidance (2013), “The mobile health global market report 2013–2017: the commercialisation of mHealth apps” (Vol. 3). 91 Source Statista—Number of mHealth app downloads worldwide from 2013 to 2017 (in billions) https://www.statista.com/statistics/625034/mobile-health-app-downloads/, last accessed February 2019. 92 Global vision provided by WHO, mHealth, Report 2011, New horizons for health through mobile technologies. 93 M. Swan, Sensor Mania! The Internet of Things, Wearable Computing, Objective Metrics, and the Quantified Self 2.0, “Journal of Sensor and Actuator Networks”, 2012, 1, p. 219. 94 The so-called “precision medicine” or “customised medicine”. 90

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1.11.1 Services in the Field of Drugs The Health umbrella covers additional services including health care portals (medical units, drugs, care and treatments, rare pathologies and more) and the use of improved Web features to supports patient and citizens95. Malaria kills over a million a year: a simple SMS could prevent 20% of those deaths. In order to fight the deadly consequences of the growing global counterfeit pharmaceutics market, MPedigree96 (Ghana 2009) enables anyone in a developing country with access to a cell phone to authenticate their drugs before use. It works via a simple SMS, accessible by default on all phones, and available on all cellular networks. Akin to the very popular scratch-card method for replenishing cellular talk-time, users reveal a single-use code on drugs and SMS it to a provisioned mobile short code, which, in turn, generates an automated verification response. There is no cost to the drug patron—genuine drug manufacturers are eager to bear the entire cost due to the entrenched benefits they stand to reap when counterfeiters are driven out of the market. Armed with a simple cell phone, users can finally rely on the quality of their medicine. Another interesting on-line service on drugs is Medicine Combination97. Medication can make one sick, if it is combined in the wrong way. Medicinkombination. dk helps multiple drug users to find out about how different drugs interact with each other. Users who take several kinds of drugs, herbal medicines, strong vitamins or mineral supplements can search on the website and quickly examine the consequences of their drug consumption and healthier combinations. The information on Medicinkombination.dk comes from the National Drug Interaction Database in Denmark which is used by health professionals and based on scientific articles and independent expert views. The user does not need to have any medical knowledge to use the service and a simple and straight-forward interface makes the content service a perfect example for other countries.

1.11.2 How to Report on Patient’s Satisfaction Have either you or a close relative been in hospital in recent months. How was the experience? Irishhealth.com’s Rate My Hospital98 facility gives citizens the opportunity to tell how the hospital scored under a range of different headings. It will help build a picture of the level of service offered by each hospital and how patient-friendly they are. This will not only help patients but will also be of benefit to hospitals in terms of getting feedback from patients and making improvements where necessary. 95

E.g. patient blogs, rare illnesses portals, natural treatments, etc. MPedigree (Ghana 2009) http://www.mpedigree.org/home, last accessed February 2019. 97 Medicine Combination (Denmark 2007) Danish Medicines Agency, http://medicinkombination. dk/, last accessed February 2019. 98 Rate My Hospital (Ireland 2007), MedMedia Group, http://www.ratemyhospital.ie/, last accessed February 2019. 96

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The application is also inviting patients to nominate individuals or units they think deserve special merit for exceptional care. The motto of the service is “Have you ever been unhappy with a hospital? If yes, you will love Rate My Hospital!” The website is a rolling online survey of patient satisfaction with the Irish health system. In line with the best of social software sites, it provides a single, clear platform for feedback on hospital treatments and services. In the first year of service close to 10.000 people have completed a comprehensive 23-part online questionnaire on their experiences in Hospitals. The site aims to provide patient-centred transparency in the Irish Hospital system, leading to improvements in the entire Health infrastructure.

Screenshot from Rate My Hospital website

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The impacts of Rate My Hospital are due to three basic dimensions: management impacts, social impacts and reputation and transparency. From the management point of view, the assessments made by patients on Rate My Hospital and the resulting statistics are able to provide guidance to health care professionals on aspects of their service and their activities that require improvements, according to the users. On the other hand, these statistics also allow citizens to identify the issues considered of particular excellence by users and therefore constitute a stimulus to continue their improvement. At the social level, this tool allows citizens to be aware of the level of hospital performance of each structure. The opinions of other patients are undoubtedly valuable information in the eyes of users, expressed by “people like them”; they allow individual users to see the future hospital experience not as a ‘leap of faith” but to face it with greater confidence. Finally, as regards the aspects of reputation and transparency, Rate My Hospital is designed to make available, simply, clearly and easily accessible information about the quality of hospitals, which allows the same to “open up customers” and achieve a wider awareness of their strengths and weaknesses, inspiring the pursuit of continuous improvement.

1.11.3 Education and Awareness Dealing with e-Health we cannot forget the e-Learning services that may be delivered care of heath care institutions99. They may take advantage from the full set of digital platforms including podcasting and smart-phones and address the needs of a wide range of potential users including administrative personnel, paramedics, medical doctors, patients and even citizens (e.g. pandemic or first aid). Education and awareness are the goals of a set of applications devoted to basic educational issues like sexual education and AIDS. Underworld100 is an early example of such products. Funny, frank and funky sex education for teenagers: Underworld is an animated, interactive, musical, detective investigation into the female reproductive system. Part narrative, part documentary and a valuable source of information, the project explores issues of sexuality with humour, characters, songs and video. The original CD-ROM includes interview footage with teenagers and adults, covering a range of topics including sexual preference, body image, young mothers, safe sex, first times and language. The detectives at Sam Sperm’s Detective Agency are on a

99

E.g. the services provided care of the Medical Unit ULSS 8 Asolo, Italy—https://www.ulssasolo. ven.it/index.php/Area-socio-sanitaria/Servizi-digitali, last accessed February 2019. 100 Underworld (Australia 2005) http://www.underworld.net.au/, no more active.

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mission to find out what’s going on during a menstrual cycle. And they also carry out other investigations.

Screenshot from UNDERWORLD application

A similar project has been developed in Canada, at the same time, The Contraception Awareness Project101, available at sexualityandu.ca, offers credible, comprehensive information on sexual health issues. SexandU.ca takes a real-life approach to the questions and issues around sex and sexuality that matter most to Canadians. From talking about sex, to lifestyle choices, to contraception awareness and sexually transmitted infections, the application provides accurate, credible, and up-to-date information and education on topics related to sexual and reproductive health. SexandU.ca makes use of unique characteristics of the Internet medium— anonymity, accessibility, expertise, interactivity and audio-visual richness—to enhance the user’s learning experience and accomplish its sexual health promotion objectives. The site is targeted to five distinct audiences, serving teens, parents, adults, teachers and health care professionals, and offers prepared and linked texts, interactive learning and referrals to preventive or treatment services. Of course, there are applications devoted not only to teenagers but even kids.

101

Contraception Awareness Project (Canada 2005) Organisation: Society of Obstetricians and Gynaecologists of Canada, RL: http://www.sexandu.ca/, last accessed February 2019.

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Alpha Beat Cancer102 is an educational APP about cancer and treatment, designed to serve as a learning tool for children diagnosed with the disease103. The main goal of this project is to provide information through challenge and recreation, using the principles of information technology combined with design, usability, gamification and user experience. The content of the APP came from Beabook—the Beaba educational booklet consisting of oncologic words and terms from A to Z—compiled by patients, caregivers, physicians and health professionals. All the material was based on information architecture and design, making use of accessible language, appropriate illustrations and optimistic texts. The APP uses linear narrative, presenting and following the path of treatment: symptoms, diagnosis and the treatment itself, counting on logical support of time, space and characters. After playing each level, terms and words are unlocked, becoming accessible in an in-game glossary, which can be consulted at any time. At the same time the user takes over the patient; she/he also controls procedures such as biopsies, application of radiotherapy and patient care in order to encourage identification with the character and her/his own treatment. This way, passivity is reduced and the patient/user is encouraged to take control over the situation. Another interesting service targeted for kids and young patients in general is L’enfant @ l’hôpital104 (Children at hospital). Children@Hospital allows seriously ill children, who are forced to live excluded from the world they are used to, to get in touch with other groups of children and adults, who keep them connected to the world, to other cultures and to educational knowledge. The multimedia platform and content, which has been created for this project, is easy to use and based on technology usually accessible for everybody. Children@Hospital is a little university where linguists, musicians and scientists make use of their knowledge to do everything they can for the ill children at hospital. The project follows the motto “learning to help healing”. A specific application, Kolibri, helps handicapped children to learn; the Kolibri motto is “Kolibri, a thousand ways to learn differently”. Ergonomic and adapted to all school handicaps, Kolibri is an interactive web application that hosts dialogues between isolated children, travellers from all over the world and passionate artists. They send out stories each week and respond personally to children’s questions. The proposed sections sharpen their curiosity, stimulate their artistic sense and their concentration. Depression is a dangerous pathology, it affects both adults and the young; SPARX105 (New Zealand 2011) is an application devoted to fight the young’s depression. SPARX is a computerized self-help programme to help young people

102

Organisation: Beaba, Brazil URL: http://beaba.org/game, last accessed February 2019. https://www.dropbox.com/s/q1rbzp4owbynh86/AlphaBeatCancer-WSA-Demo.mp4, last accessed February 2019. 104 Children at hospital (France 2005) http://www.enfant-hopital.org/, last accessed February 2019. 105 SPARX (New Zealand 2011), Ms. Sally Merry, University of Auckland, https://www.sparx.org. nz/, last accessed February 2019. 103

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combat depression. It was developed by a team of cognitive behavioural therapists, researchers, game developers, e-Learning theorists and young people. SPARX takes the form of an animated 3D game where users learn real-life skills by solving challenges to rid a fantasy world from gloom and negativity. Culturally relevant elements have been incorporated into the game world to ensure the programme has wide cultural acceptability. SPARX is unique because of the gaming technology it uses to engage users and because over 180 young people have been involved in a trial to test its effectiveness. Feedback from the testers called SPARX effective, engaging and helpful. As one in four youngsters experience an episode of clinical depression by the age of 18, and three quarters of them never receive help, this programme has the potential to make a positive impact on the lives of many young people in New Zealand and internationally. SPARX is a unique product combining computer game features in the field of cognitive behavioural therapy. The main target group for SPARX are young people. As studies show, almost ¼ of youngsters have suffered from depression before reaching adulthood and without getting any help. There are many reasons why they are left alone with their problems, thus reaching out in a format familiar to them could be considered a breakthrough in health and therapy fields. In SPARX, you tackle and solve series of quests, learn to think, talk and act in a constructive way; you are encouraged to analyse and compare your traditional behaviour to the improved one, and apply these skills in everyday situations. SPARX helps build the way to better self-esteem and manage mood and stress in real life. SPARX is based on a 3D animated game platform and is accessible in DVD format; since fall 2011 it has been also available online. It could be said that SPARX has introduced a concept of a novel and long-awaited approach to health issues regarding young people, creating a new category of “healthtainment”. e-Learning projects and services devoted to young people do not cover the whole sector. As happens in other domains, importance of Lifelong Learning is growing and enlarging in every field: institutions, companies, governments and scientific communities recognize the importance and the need of continuous updating. Some countries made lifelong learning courses mandatory for medical doctors and paramedic personnel106. It is through interactive educational activities that the most effective learning is achieved. In order to improve the everyday clinical practice, it is necessary to develop new ideas and this is exactly what experiential learning does107. Experiential learning is an outstanding breakthrough in the educational field and a new way to bring professional knowledge to the next level through a stimulating and memorable experience. 106

E.g. ECM, continuing education programme for medical doctors in Italy—http://www.salute. gov.it/portale/temi/p2_6.jsp?lingua=italiano&id=3653&area=ecm&menu=vuoto, last accessed February 2019. 107 A significant example of collaborative experiential learning is due to CELL (Centre for Experiential Learning), developed care of QBGROUP Padova Italy (http://www.qbgroup.it/works/cell/), last accessed February 2019.

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One of the first experiences in the use of cutting edge technologies in the field of experiential learning was The CELL (Centre for Experiential Learning108), conceived and developed in 2008 it revolutionized the Continuing Medical Education world. The CELL is a learning technological environment for high-level education, based on natural interaction and experiential learning, where all health care professionals can interact with patients (or colleagues) in real time and discuss diagnostic, therapeutic or pharmacoeconomic choices in small and large groups. The CELL is the first-ever Centre for Experiential Learning in the world and in 2009 it won the World Summit Award as the most innovative educational project in healthcare. Originally located within the premises of the developing company, the CELL changed location in 2014: it’s now hosted in the city centre of Padua in an ancient and prestigious building that once was the San Francesco Grande Hospital, the first medical clinic in modern history. The restoration of the building gave birth to Palazzo della Salute, a multi-functional environment that was designed to host educational CELL courses. What is Experiential Training? Experiential training in the clinic means greater effectiveness in patient care and safety. Thanks to the innovative CELL format, health professionals can also learn and update themselves with simulation, like aircraft pilots, to experience a clinical path that develops over a period of several months, first interacting with a virtual patient in real time and, later, discussing the diagnostic-therapeutic choices made with the teachers and colleagues present in the classroom in a context of peer learning. In this way, health workers step-by-step meet the patient at different times of therapy and how in reality they control the effects of the patient on the patient, using laboratory and instrumental analysis with the aim of reaching the patient’s recovery. The protected context of the simulation allows doctors to leave their area of therapeutic comfort by experimenting with therapeutic strategies that perhaps in clinical practice would not apply, supported by the possibility of confronting real problems with teachers of great experience present in the classroom. The impact of The CELL on the medical sector was relevant because of the opportunity to train in a realistic environment not individuals but teams of medical doctors, bettering their ability to work together as a synergic unit. The approach is similar to the TV series “Doctor House”. The system, fed with a real medical case study, duly anonymised, proposes to the medical team a clinical case, offering the opportunity to interact, thanks to a video wall, with the colleague close to the patient. The medical team can pose direct questions to the patient and have a look to his/her medical folder, setting specific exams or tests, thanks to a team working to identify the disease and the related cure. The system is then able to shorten the time line and provides the effects of the specific cure through the time. Thanks to the opportunity to upload real case study the system acts like a flight simulator, providing the opportunity to face a number of case studies in a compressed amount of time; in

108

Conceived and developed by QBGROUP http://www.qbgroup.it, last accessed February 2019.

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addition such patrimony of experiences is shared among the team members that will, in such way, be trained to better cooperate. Having tested the system for a reasonable period of time, the next goal to be achieved was to ease the fruition of the system, eliminating, for the medical team, the need to leave their own hospital and travel to the physical location of the CELL. The solution was developed in 2013, in order to improve the training service, instead to move the medical equip to the CELL centre it was developed the “CELL Explorer109”. The CELL Explorer is a Mobile Experiential Learning Facility, the “Next Big Thing” in Continuing Medical Education. The Cell Explorer is a high-tech mobile laboratory that, once positioned, opens and develops over 120 m2 and is equipped with the most sophisticated interactive and virtual technologies. A 65 m2 training room that can accommodate up to 30 people, a 65 m2 reception room, a room called Calypso of 30 m2 for experiential training, not forgetting toilets. Equipped with air conditioning, power generators and a satellite uplink the mobile centre is completely self-sufficient. All the benefits of training with the CELL Explorer: • • • •

Itinerant experiential training Active participation of learners in the training path Healthcare personnel having not to move from their place of work Comparison and exchange of best practices throughout the national territory; substantial savings in logistics.

Within the domain of education and training we find, among the others, two relevant sectors: serious games and virtual laboratories. Virtual laboratories offer to a number of students and trainees the opportunity to put their “hands on” a laboratory trying experiments, making exams and more. Virtual laboratories110 may offer the opportunity to learn thanks to simulated live experiences such as the use of a microscope to observe a portion of human liver affected by steatosis. Thanks to the virtual laboratory a huge number of students spread in different locations can observe, set the microscope, changing the magnifying ratio, moving the target under the lens and more, acting exactly as required by a physical microscope. The same simulation can be used to set up a number of laboratories: physics, chemistry, biology111, etc.

109

CELL Explorer http://www.qbgroup.it/works/cell-explorer/, last accessed February 2019. E.g. http://www.hhmi.org/biointeractive/explore-virtual-labs, last accessed February 2019. 111 Michael Pedersen, Nicolas Oury, et al. (2014), Bio Simulators: a web UI for biological simulation, Bioinformatics, Volume 30, Issue 10, 15 May 2014, Pages 1491–1492, https://doi. org/10.1093/bioinformatics/btu050, Oxford Academic. 110

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1.11.4 Mobile Virtual Laboratories and Mobile Medical Facilities The use of both remote labs and more in general e-Health may be the key factor in reducing the health care problems of third-world and emerging countries. As an example, health care is one of the most fundamental needs for sub-Saharan Africa considering the region’s multiple medical problems112. A powerful tool to help developing countries to offer better health services or to fight pandemics and other plagues is tele-consultation and tele-diagnosis. Many times, it is enough to use a laptop equipped with on-the-shelf devices and a satellite uplink to share medical data between developing countries and leading teams of experts working in industrialised countries. Tests are already being done since a long time and services on a regular basis are provided in different fields: tele-consultation, tele-diagnosis and even tele-surgery. Research in these fields was carried out a long time ago care of different armies. Early in 1990s the idea to provide medical support and even tele-surgery to soldiers close to the battlefield was one of the research focuses in the army. Both the United States and Israel developed interesting studies based on both remote assistance and tele-surgery. Virtual reality and tele-presence were deeply investigated for these scopes. A number of experiments were carried, out including surgical operations carried out by robots remotely controlled113. These applications faced some problems such as the delay of feedback signals due to the latency time in data transmission or the need to further develop haptic devices in order to provide a high-fidelity force feedback enabling the doctor to feel the physical presence of human organs. An interesting experience has been carried out by New Zealand since 2002, Mobile Health114. Imagine New Zealand’s smallest hospitals having as a motto “The Best Care Closest to Home”. Since the closure of surgical services in primary hospitals in the 1980s and 1990s many people who live in rural and remote areas have been forced to travel, often for many hours, in order to get treatment. Mobile Health brings the benefits of elective day surgery to over 500,000 rural New Zealanders, enabling people to have their surgery in their local community close to their existing support structures. The key hardware component of Mobile Health is a 20-m-long, 39 tonne mobile surgical unit cruising the country. It is providing low-risk day surgery using local and regional healthcare professionals in a 5-week cycle. For emergency and complex surgery, the bus is fitted with an interactive video system, providing local surgical

112

The world Health Organisation (WHO) reports that at the end of 2001, more than 70% of the people world-wide living with HIV were located in the sub-Saharan Africa. Malaria is another relevant plague in the same area even more than 15 years later. 113 In the 1990s, among the other experiments, a pig was surgically operated by a doctor controlling a robot between Italy and the United States. 114 Mobile Health, New Zealand, Producer: Mobile Surgical Services, http://www.mobilesurgical. co.nz/, last accessed February 2019.

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teams with real-time collaboration with expert colleagues off-site. The Mobile Surgical Service brings state-of-the-art expertise into the heartland of New Zealand. Mobile Health activity has proven that sharing expensive medical resources enables better care to be delivered closer to the homes of rural New Zealanders, saving money at the same time if compared with local facilities. More than 21,000 elective day surgery operations are completed aboard the Mobile Surgical Unit. Rural health professionals are also supported through a range of education and training programmes. More than 45,000 hours of training and education have been provided over the last 13 years through a variety of both hands-on and virtual means. Strong community partnerships are the key to the success. Rather than replacing existing health services, Mobile Health acts as a catalyst for communities and rural health professionals to develop a better rural health system. Mobile Health works closely with the Ministry of Health, district health boards (DHBs115) and local health organisations to provide treatment and education at more than 24 rural locations throughout New Zealand. Mobile Health promises to deliver a safe, friendly and quality-driven service. Having surgery can be a daunting experience but being able to have surgery in the familiar surroundings of the local community will enable citizens to have good support from family, friends and caregivers. Mobile Health is a privately-owned company that works in partnership with the Ministry of Health, District Health Boards and other health providers to deliver low risk elective day surgery to rural New Zealanders. In addition to providing easily accessible surgical services they provide quality continuing education to rural health professionals via a high-speed telepresence network. Mobile Health believes that strong community partnerships are the key to success.

1.11.5 “Makers” in the Field of Health In the 1990s a company116 started to ask through their website for 3D models regardless the size or the format of the file (3D studio, Maya, Softimage, etc.); within few months they set up a well-structured catalogue of 3D models subdivided by field of use: architecture, animals, cars and bikes, human body, military items, etc. Very soon one of the most relevant ones was the one related to human body organs. Dentists used to simulate and show to their patients the foreseen intervention, thanks to computer graphics animations; orthopaedic simulated specific cures on bones and articulations; surgeons with various specialties did the same on various organs. It was a big success for the company. Since that time the use of 3D graphics joined the developments of health sectors in medical imagery, micro-surgery, tele-surgery,

115

DHB district health board funds and provides health services at district level. My DHB on line service helps you find these services and tells how well each DHB is performing. 116 In the 1990s the name of the company was Viewpoint.

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endoscopy, and more. One of the next steps in the new century was to use accurate 3D scanning to create specific 3D models of some portions of a patient’s body. The explosion of “makers” and 3D printing opened a new scenario; dentists put a special 3D scanner in the mouth of the patient, acquiring an accurate 3D model of the dental arch as a cloud of points. Convert the cloud into surfaces and, thanks to an ad hoc modelling system, design the perfect prosthesis, once duly checked on line, the software model is transferred to a 3D printer and printed, and let’s say, just in time to check it on the patient and, if positive, transfer the data set to the denturist waiting for data transmission in his/her dental laboratory. In a similar way 3D scans of bones and articulations are modified and printed in 3D. Of course, today’s printing materials are not suitable for direct use, so we will not experience in the near future something like the flesh and bones “printing” as shown in the movie the fifth element117, but we never know what the future will offer.

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Dependency and Technological Vulnerabilities

It takes just a simple “touch” to enter the world of the infinite potential that mobilehealth offers, protecting health and building one’s “individual identity” through constant comparison with one’s own body, even its most hidden and impalpable alterations, such as the change in blood sugar or a cardiac arrhythmia. Just a “touch” even to get out? To what extent does an offer increasingly pervasive with regard to medical and therapeutic indications not end up becoming obsessive, deeply affecting the lifestyle of individuals and the models of coexistence? As already noted, it may develop different forms of addiction, both individual, social and political. The “personal dependence/addiction” is expressed in attention to the individual variations of their psycho-physical conditions, which could lead to a real disease health-conscious, exaggerating the fear of the disease and morbid attention to the most insignificant details and the consequent medicalization, the so-called phenomenon “quantified self”118. This expression indicates a tendency to incorporate technology in everyday life with the recording and comparison of real-time data of human activity: measurement of food consumed and number of kilometres covered,

The fifth element (1997), movie director: Luc Besson, actors: Bruce Willis, Milla Jovovich, Gary Oldman. 118 Quantified self was a movement born in scientific thought (in San Francisco in 2007) and became a “philosophy of life”, summarized in “quantifies slogan, therefore I am.” On the topic see—The corps, nouvel objet connecté, du quantified self to the m-santé, les nouveaux territoires de la mise en données du monde, Commission National de l’Informatique et des Libertés, May 2014. 117

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control of the calories consumed, the quality of air breathed, registration of the emotional state of the physical and mental119 performance. This trend is part of a wider context, in which prevention is increasingly understood in an individualistic sense, devaluing the collective dimension of health, the importance of which results in the induction of particular lifestyles, in emphasis on control, self-management of health and individual responsibility for one’s own health. A similar trend may contribute to exasperate forms of health consciousness and medicalization of life, but also may contribute to the widespread government of people’s lives, placing particular emphasis on health reductively understood as only physical well-being. You could also set up a “social dependence” by creating “rules of conduct” that contribute to raising and continually redefining the “performance” standards considered “normal” in society, which ends with imposing itself on others, in a race to health consciousness but also to consumerism (market pressures to purchase new APPs or supplements or drugs to improve physical and mental performance) and medicalization (consider no ability to achieve certain objectives, such as a disease that makes them uncomfortable)120. A similar condition can lead to expropriation of their autonomy by the market, and even expropriation by themselves. Those not using these technologies could be looked at with suspicion and suffer serious limitations in social life. You could also define scenarios of “political dependence”, which means the use of these technologies could be made mandatory, reducing individual autonomy and justifying an intrusion more and more intense in the sphere of personal intimacy. As an example, just think about the possibility that in the near future citizens for the purchase of insurance policies life insurance and/or health may be classified into different “clusters” for more favourable economic conditions, according to the proven use of such technology packages, so that their very use would be “almost mandatory”; otherwise they will be excluded from groups with a lower insurance premium. This could then develop—if one is not already in place—into a form of “economic dependence” so the price of these technologies, initially insignificant, tends to grow as the demand increases due to their widespread and systematic use. We cannot forget that it is the market that stimulates and fuels the proliferation of mobile-health and so the market will be, without a proper regulation, in charge of deciding prices and methods of use. More and more frequently, as mentioned, it is

119

This phenomenon has been interpreted as the application of the scientific method to the personal sphere, with the “aim of the biometric quantification of himself and of data sharing through ICT”. The push for quantification of himself and “datizzazione” psychic corporee-functions can be born from the desire of self-control: by measuring it feels able to exercise power over themselves. Keep tabs on what you can give the feeling of being masters of their own destiny in a time like ours, marked by uncertainty. The difficulties or no ability to control the world and what is happening around us urges us to fill up with a kind of “compensatory” mechanism that lacks the will to control what becomes technologically controllable. 120 Issue addressed by the CNB in its opinion Neuroscience and pharmacological cognitive enhancement: Bioethical profiles, 2013.

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the offer of free access to certain benefits in exchange for the waiver of confidentiality in data processing. What and how many constraints could emerge with time and use? Addiction is not a new phenomenon. In many respects our whole existence is built on the needs, desires and passions that make us “addicted” to others and to objects. In mobile-health this phenomenon occurs in a variety of ways, through exacerbating the fear of the disease or the obsession with health; such kinds of anxieties for attention and reputation are often generated by social networks. It is not ruled out that ease of access, loneliness in use, compulsiveness in pending the results develop diseases similar to what already is found in compulsive gambling. Next to the regulation and supervision arises, therefore, a more general problem of education about the use of media and their relationship with your body and health. The existence of an increasingly complex and sophisticated technology without a corresponding increase in awareness and cultural levels it is not conceivable.

1.12.1 The Self-Management of Health Google is already the “Doctor” of Americans? It is even more so since the Apple watch went on sale, and later on products from all the competitors starting from Samsung. Apple Watch, the wristwatch designed to ensure constant monitoring of our health, interconnected with all benefits offered by the network, this partially is and may become the mainstream in the near future. New technologies can play a decisive role in radically changing the way the citizens operate their own state of well-being and health. We are witnessing the phenomenon of increased active participation of the subject because of the improvement of education levels (in the technologically advanced countries) and increasingly pervasive availability of ICT as a tool for knowledge, in the context of the cultural changes that tend to reduce the constitutive information asymmetry between doctor and patient. The active participation by citizens in the management of their own health is a very positive element, but it can have negative implications to the extent that it expresses a desire for self-medication: the citizen/patient may feel able to take care of themselves, be responsible for their own health, without feeling the need for a physician. The opportunity to download independently i-tests/home-testing and information technology tools that allow the analysis, the interpretation and the display by comparative diagrams of the data at any time and place, can lead to the self-medication, the self-diagnosis, the “auto-treatment121”. This can have 121

In this regard it is stressed the possibility of buying drugs online, and substances, such as opioids, also dangerous, by users without any prescription from the doctor. See in this regard: F. Bert, V. Galis, S. Passi, M.R. Gualano, R. Siliquini, Differences existing between the USA and Europe in opioids purchase on the Internet: An interpretative review, “Journal of Substance Use”, 2014, online Early: 1–8.

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advantages in some aspects in the sphere of prevention of disease and the maintenance of appropriate life-styles122, but it cannot substitute the role of physicians. Of course, the idea of self-care was well represented even before the advent of the Internet; the medical encyclopaedia was already the patrimony of citizens caring about their health and hypochondriacs. But at that time it was a book to be interpreted and the trust relation between books and humans was well known; this time the message is perceived as delivered by a superior authority or the wisdom of crowds if it comes from blogs or social media, so it may appear more authoritative. The ethical problem arises in relation to the diagnosis and treatment of diseases, when the patient does not have sufficient skills and information to assess medical aspects directly. Arises, in this context, the problem of medical skills and computer/ digital capabilities of safe use of the technical tools available, as well as of reliability/ security of the technologies themselves. The user can have access to data that were once generally mediated by the doctor, but now you can get it directly. Taking adequately into consideration such aspects, applications for medical purposes (diagnostic, therapeutic, welfare) should be used under compulsory medical supervision (information at the time of downloading the app/condition for downloading app). It must be the physician who adequately informs the patient and makes sure he is able to use this instrument, and that the instrument is reliable, to avoid patient forms of self-management that would endanger his health. Even on the physician side the use of m-Health may present many advantages, allowing real-time monitoring of the patient even from a remote location. This is an improvement of assistance in terms of quantity and quality; but at the same time can become a mode of irresponsibility for the doctor, who “passes” the responsibility to the patient, limiting more and more visits “face-to-face”, with the consequence of reducing the interpersonal relationship (replacing it with “video-visits”), impoverishing or even eliminating the relationship with the patient.

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“Seniors”: An Increasing User Sector

Dealing with e-Services and human computer interaction issues we must approach a specific domain that is relevant in several respects: Politically: Population is aging and the expectation of life is increasing; governments face the problem to adequately assist an increasing sector of the society having different needs and behaviours; elder-friendly technology and PPP123 may help; Economically: the increasing costs due to both basic and healthcare assistance to be provided to elderly people push governments and stakeholders to investigate, keeping quality of the services equal or, even better, downsizing costs;

122 123

Cfr. CNB, Lifestyle and Health Protection, 2014. PPP Public Private Partnership.

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Socially: new challenges due to new third, fourth and even fifth ages together with social significant changes in young generations still looking for economic independence and last but not least the recent increasing mix of cultures and cultural models generate the modification of social assistance (cultural mediators, multilingualism in service providing, etc.) Technologically: many times, in this sector we used to think about the day after tomorrow, skipping today and tomorrow; network infrastructure is there, there is a bunch of useful software tools and APPs addressed to the elderly, tablets and smartphones have overturned the scenario but it is evident that there is a gap to be bridged; how many elderlies feel comfortable with this environment?

1.13.1 Social Weakness In modern society, the elderly are becoming increasingly conscious of the fact that the time available to them is limited. This feeling is amplified even more in the elderly who are afflicted by the so-called “social weakness”, caused by the continuous acceleration of technological, economic and social processes that change the natural timeline. An example of this alteration of the timeline is caused by the modern society that incites people towards the patterns of eternal contrived youth, achieved through artificial methods such as the use of technologies of rejuvenation, surgery and drugs. Despite the elderly being physically weak, they had mental clarity and they were considered as a valuable knowledge base to be observed with reverence and devotion. The elderly were considered as an important social group for everyone. In modern society, however, information is transmitted mainly through writings and any type of media, such as the Internet. Today, the speed of progress makes the knowledge of the elderlies often obsolete and no longer useful. This determines a significant decline of their social power that leads inexorably to an exclusion and sometimes to an expulsion from today’s society. This situation ethically imposes finding new solutions to give to elderlies a new social role. Trying to fight against aging through artificial methods cannot represent a valid ethical solution because it covers only aesthetic factors and does not improve health status or personal abilities. Another factor that in modern society has contributed to the “social weakness” of the elderly regards how knowledge and information are shared. In particular, it regards the decline in the oral transfer of knowledge to new generations. In the pre-industrial society, older people transmitted the dissemination of knowledge and wisdom only orally and it was focused mainly on life stories and life experiences. For this reason, the role of elderlies was fundamental for the evolution of civilization because they represented the only way to transmit knowledge.

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1.13.2 Aging in Europe The average life expectancy in Europe has reached more than 80 years and by 2020 about 25% of the population will be over 65 years of age. Nowadays, technology offers the elderly the opportunity to live independently and continue to enjoy a high standard of quality of life. Unfortunately, some barriers still prevent the older generation from taking full advantage of the communication technology. Longterm forecasts124 predict an increase of about 35% of people over 50 years of age between the 2005 and the 2050, while the number of people with more than 85 years of age will triple by 2050. The OECD125 data also provides for an increase in costs due to an aging population in Japan, in the United States and in Europe. One cause of population aging, apart of course from the increasing life expectancy, is the decline in fertility rates of people. This results in Europe in a ratio of 4:1 among working people and the rest of the population, and by 2050 it will reach a ratio up to 2:1. This imbalance between the active and retired people causes a significant increase of health care costs, subtracting money from other areas, displeasing the other citizens. If this trend will not be stopped by a targeted intervention in the countries at risk, the social models and the public finances will incur serious problems. The obstacles that stand between the elderly and the use of ICT must be overcome and policies for the diffusion of ICT among the elderly must be actuated. Old age should not be seen as a disease even if often it means being physically weaker and suffering from mental deficiency. In general, the health conditions for the people should remain acceptable to at least 90 years of age. Recent data show that in the last 2 years of a person’s life, he spends about a quarter of the health care costs that he bears in all his life, regardless of the age of death. This means that the costs for the health care partially increase due to aging of population. Considering that most people die over 65 years of age, this has led to thinking that the health care costs for the elderly are high. In contrast, however, the financial burden of social people suffering from chronic diseases or suffering from disabilities, in reality, is not as expensive as presumed. Financially, the elderlies can be divided into two categories: those that are just weak and cannot be classified as sick or disabled, and those that are sick and can no longer live alone. The latter category is often forced to make use of nursing homes and pay their own fees, unless the health system does not intervene economically. Older people forced to pay, using the money from the pensions, their savings, from the sale of their home. This system, for many seniors, is unsustainable and is also ethically intolerable.

124

Source OECD Organisation for Economic Co-operation and Development, http://www.oecd. org/, last accessed February 2019. 125 Source OECD Organisation for Economic Co-operation and Development, http://www.oecd. org/

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Also, due to aging, there is a decrease in the percentage of people in the working world. This leads to a context where there are tax restrictions, inevitably leading to lower economic power and therefore leading services for older citizens. What can the ICT do? ICT could help to increase the percentage of workers and reduce the need of nursing homes for elderlies in need of constant care. The European community encourages an action plan to age well by exploiting the potential of the information society. Through that, the goal is to keep seniors more active and as productive as possible, giving them the tools to engage in the social life through on-line services (e-inclusion) and through healthier lifestyles of quality. According to the social sciences, it is necessary to redesign the role of “older people”, giving back the lost role they had in the pre-industrial era, with the support of ICT. In this way, the elderly figure can be empowered. This can be done changing the so-called “aging” in a model where ICT is at the base to create new legislation geared to senior citizens. The objective is to improve social care and health care and to apply technologies of care. The elderlies are characterized by a double weakness: (1) the physical weakness that results in a reduction of mobility, memory and learning, (2) the social exclusion for the above reasons. Both of these causes of fragility can be postponed and mitigated but it is not possible to avoid them because they derive from biological processes that lead also to a lack of a positive social role in the modern context. The current model of the role of the elderly does not confer any benefit to modern society and needs to be completely reconsidered according to radical changes in the political and ethical realms. An idea is to make elderlies responsible, modelling again the perception of time, giving them more time in a subjective way (i.e. filling their time with events and making them able to follow their interests) and in an objective way (i.e. giving them the possibility to get a loan or a credit). This permits the elderly to stay active and productive for a longer time, thus removing the feeling of limited time often marked by a never-ending list of medical exams and check-ups.

1.13.3 Most Common Chronic Diseases126 When dealing with third and fourth age seniors chronic diseases may be considered some of the key aspects. Chronic conditions have persistent or recurring health consequences lasting for years. They are illnesses or impairments that cannot be cured. Some of the most prevalent chronic conditions, such as sinusitis or hay fever, are generally not disabling; however, others, such as heart disease and arthritis, can cause significant limitations in people’s ability to perform certain basic activities of daily living (ADLs). Thus, in addition to medical services, people who have chronic

126

Source WHO—World Health Statistics 2016–2017: Monitoring health for the SDGs.

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conditions often need personal, social, or rehabilitative care over a prolonged period of time. Some of the most frequent chronic diseases are: Age 75+ • Allergies • Arthritis • Hypertension • Hearing impairments • Heart Disease • Cataracts • Diabetes All Ages • Sinusitis • Arthritis • Orthopaedic impairments • Hypertension • Hay Fever Technology also holds great potential for improving the quality of life of older people. For example, technology and telemedicine/e-Health applications offer the possibility of increasing the physical and emotional well-being of older people and allowing them to remain at home longer127. With expansions in the 85 and older population, of whom approximately half require assistance with everyday activities, we will need information systems designed to help the aging to maintain their independence and meet their social, health, and other needs. Technology can be used to monitor, remotely, people with chronic illnesses. This means minimizing the need to visit a hospital’s premises thanks to wearable medical equipment128. Videoconferencing applications may also make it possible for a physician to “visit” or counsel patients, particularly those with impaired mobility, minimizing the need for travel. The Internet also affords patient access to a vast array of health-related information. It can also be used to facilitate communication between the patient and a provider, other family members, or people who have the same illness or disease. Finally, reminder systems such as automated messaging can be used to remind patients of medication regimes, medical prescriptions before exams or medical appointments.

127

A typical example in Europe is the Assisted Ambient Living (AAL) joint programme. The AAL Joint Programme is a so-called “article 169 initiative” that was initiated by its member organisations. The status “article 169 initiative” was achieved only after the European Commission launched a co-decision procedure in which both the European Parliament and the Council had to take a positive decision on the initiative. 128 E.g. wrist-watch like medical equipment able to track blood pressure, heartbeats, skin humidity, acceleration, light exposure, etc.

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MUSME: The Interactive Museum of History of Medicine

At the end of the chapter devoted to e-Health it is worth concluding by introducing one of the digital museums devoted to the history of medicine. MUSME is the first Museum of History of Medicine in Italy to combine the “classical” museum visit with interactivity and innovative educational technologies. In MUSME the visitor is not only a passive spectator but becomes an active user of a real experience. MUSME was founded in Padua and has reason to have the Veneto as the seat for the role exercised by the Padovana Medical School in the context of European universities in the 1400s and 1500s, where the greatest masters taught and produced their best works. On this basis, the Province of Padua, owner of the headquarters of MUSME, formerly San Francesco Grande Hospital, has promoted the complex restoration of the building, with the contribution of the State, the Veneto Region, the Municipality of Padua and the Società Autostrade Padova-Brescia, based on a project by the University of Padua, to create a Museum capable of collecting and enhancing the historical memory of the glittering past that has illuminated all of Europe with its medical knowledge. In 2008, the Province of Padua, the University of Padua, the Veneto Region, the Municipality of Padua, the Hospital and the Local Healthcare Unit established the “Foundation Museum of the History of Medicine and Health in Padua” to collect, preserve and enhance the testimonies of a Paduan medical and scientific culture that yesterday, represented an international excellence as it does today. With the precious contribution of the Scientific Committee and with the contribution of the Cassa di Risparmio Foundation of Padua and Rovigo for the preparation, the Museum today represents an unmissable opportunity to visit a place that combines ancient history with modern technology. The Palazzo MUSME building was built in the second half of the year 1414. The owners of the land, Baldo dei Bonafari and his wife Sibilia de Cetto, married since 1390, wanted and financed this building with their own means. Peculiar characteristics of this realization of their will, exclusively Paduan, in addition to private financing, were the secular origin and its location in the city centre, to meet the health and welfare needs of the urban population. The hospital of San Francesco was active until March 29, 1798, when it was replaced by a new hospital located outside the Porta di Corvo gate in the old seat of the Jesuit convent of Padua. The new hospital, always dedicated to St. Francis, was wanted and partly financed by the then Bishop of Padua Nicolò Giustiniani. On the death of the bishop the new hospital was named Ospedale Giustinianeo. The collection of the MUSME boasts more than 300 pieces from the most important city institutions, in particular: • State Archive of Padua • Hospital of Padua • Civic Museums of Padua

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• ULSS n.16—Veneto Region • University of Padua as well as numerous loans from private citizens, all aimed at building a museum for “all” and constantly renewing and evolving. MUSME was created with the following objectives: – Realization of an exhibition itinerary that gave the right emphasis to the excellent Padovana Medical School and its role in History; – Creation of an innovative Museum, in which the use of technology was not an end in itself but aimed at a better use of content and aimed at giving the visitor an active experience; – Making content of high scientific value accessible to a wide audience and not limited to “insiders”; – Recovery of a building of the highest historical and architectural value; – Completion of a project that saw the participation of several public bodies (Province of Padua, University, Veneto Region, Municipality) and a private entity. The MUSME is divided into six main rooms, a “new generation” anatomical theatre and eight thematic exhibition spaces each dedicated to an Organ/apparatus. The rooms on the ground floor are dedicated to the history of the structure that houses the museum129 and the University of Padua in the sixteenth century, years in which were created structures that make Padua an excellence at the European level: anatomic theatre (1594) and botanical garden (1545). In these rooms it will be possible, with a little trick, to physically “leaf through” ancient volumes without the fear of ruining them and studying, on a large touch table, ancient documents on the hospital and on the restoration work done on the building. The four rooms on the upper floors, however, respond to the great questions that Medicine has placed, over the centuries, in relation to the Human Body: – – – –

How it’s done? Anatomy Room How does it work? Physiology Room How do you get sick? Pathology Room How to cure? Therapy Room

Thanks to the support of technology, in these rooms the visitor can, among other things, see himself reflected in a magic mirror that will show him his organs, bones and muscles; auscultate heart and lungs as if by a real doctor; and see under the microscope the main pathogens due to the main diseases known today.

129 The former Hospital of San Francesco, born in 1414 on the initiative of Sibilia de’Cetto and Baldo dei Bonafari.

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The location of “auscultation” of pathological cardiac and pulmonary sounds (courtesy of MUSME)

The tour then continues through the large “stage” that opens onto a modern “Sector Table” where there is the outline of the great Vesalian man: a man of 8 m on which, thanks to the mapped projections, it will be possible to have innovative lessons on anatomy, analysing organs and apparatuses to which the exhibition spaces surrounding the “theatre” are also dedicated. The Vesaliano man can also “tell” in a voice the images that are projected on his body in a recording “in loop” or “commanded” manually in remote with the aid of an iPad. The entire journey can be followed by those who want it, thanks to the support of distinguished “virtual tutors”, which the visitor can “activate” as he pleases. Specifically, it is about: – – – – – – – –

Sibilia de Cetto Giovanni Battista Da Monte Galileo Galilei Nicolò Da Ponte Andrea Vesalio Santorio Santorio Giovanni Battista Morgagni Prospero Alpini http://www.musme.it, last accessed February 2019.

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References 1. Wootton R (ed) (1999b) European telemedicine 1998/99. Kensington Publications, London 2. Eysenbach G (2001) What is e-health? J Med Internet Res 3(2):E20 3. Riva G (2000) From telehealth to e-health: Internet and distributed virtual reality in health care. CyberPsychol Behav 3(6):989–998 4. Robinson S (2006) eHealth is worth it. eHealth IMPACT Project, Bonn, Germany http://www. ehealth-impact.org 5. Anderson JG (2007) Social, ethical and legal barriers to e-health. Int J Med Inform 76:480–483 6. European Commission (2000) Health strategy 2000 – com 285. Commission of the European Communities, Brussels http://europa.eu/eur-lex/en/com/pdf/2000/en_500PC0285.pdf 7. European Commission (2004) e-Health – making healthcare better for European citizens: an action plan for a European e-Health area – com 356. Commission of the European Communities, Brussels http://europa.eu.int/information_society/doc/qualif/health/COM_2004_0356_F_ EN_ACTE.pdf 8. Gaggioli A, di Carlo S, Mantovani F, Castelnuovo G, Riva G (2005) A telemedicine survey among Milan doctors. J Telemed Telecare 11(1):29–34 9. ISTAG (2002) Report of working group 60 of the IST advisory group concerning strategic orientations & priorities for IST in fp6. ISTAG, Bruxelles 10. Mannan R, Murphy J, Jones M (2006) Is primary care ready to embrace e-health? A qualitative study of staff in a London primary care trust. Inform Prim Care 14(2):121–131 11. Jaatun MG, Zhao G, Chunming R (eds) (2009) Cloud computing. Springer. ISBN:978-3-64210665-1 12. Morganti F (2004) Virtual interaction in cognitive neuropsychology. In: Riva G, Botella C, Legéron P, Optale G (eds) Cybertherapy: Internet and virtual reality as assessment and rehabilitation tools for clinical psychology and neuroscience. IOS Press, Amsterdam, pp 85–101. http://www.cybertherapy.info/pages/book3.htm 13. Renò LA (2005) Presence and mediated spaces: a review. PsychNol J 3(2):181–199 http:// www.psychnology.org/pnj182(183)_reno_abstract.htm 14. Rettie RM (2005) Presence and embodiment in mobile phone communication. PsychNol J 3 (1):16–34 http://www.psychnology.org/pnj13(11)_rettie_abstract.htm 15. Steele Gray C, Mercer SW et al (2017) eHealth advances in support of people with complex care needs: case examples from Canada, Scotland and the United States. Int J Integr Care 17 (5):21. https://doi.org/10.5334/ijic.3523 16. Riva G, Castelnuovo G, Mantovani F (2006) Transformation of flow in rehabilitation: the role of advanced communication technologies. Behav Res Methods 38(2):237–244 17. Riva G, Vatalaro F, Davide F, Alcañiz M (eds) (2004) Ambient intelligence: the evolution of technology, communication and cognition towards the future of human-computer interaction. IOS Press, Amsterdam http://www.emergingcommunication.com/volume6.html 18. Rizzo A, Schultheis MT, Kerns K, Mateer C (2004) Analysis of assets for virtual reality applications in neuropsychology. Neuropsychol Rehabil 14(1–2):207–239 19. Rose FD, Brooks BM, Rizzo AA (2005) Virtual reality in brain damage rehabilitation: review. CyberPsychol Behav 8(3):241–262 (discussion 263–271) 20. Spagnolli A, Gamberini L (2005) A place for presence. Understanding the human involvement in mediated interactive environments. PsychNol J 3(1):6–15 http://www.psychnology.org/ pnj13(11)_spagnolli_gamberini_abstract.htm 21. Standen PJ, Brown DJ (2005) Virtual reality in the rehabilitation of people with intellectual disabilities: review. CyberPsychol Behav 8(3):272–282 discussion 283–278 22. Stroetmann KA, Jones T, Dobrev A, Stroetmann NV (2006) eHealth is worth it: the economic benefits of implemented eHealth solutions at ten European sites. eHealth IMPACT Project, Bonn, Germany http://www.ehealth-impact.org 23. Wiederhold BK, Rizzo AS (2005) Virtual reality and applied psychophysiology. Appl Psychophysiol Biofeedback 30(3):183–185

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24. Wiederhold BK, Wiederhold MD (2004) The future of cybertherapy: improved options with advanced technologies. Stud Health Technol Inform 99:263–270 25. Wootton R (1999a) Telemedicine: an introduction. In: Wootton R (ed) European telemedicine 1998/99. Kensington Publications, London, pp 10–12 26. Kroeker KL, Medical nanobots. Commun ACM 52, no 10, September 2009 27. Snow B, Brooks C, Privacy and security. Commun ACM 52, no 9, August 2009 28. Monroe D, Micromedicine to the rescue. Commun ACM 52, no 8, June 2009 29. Medical image modelling tools and applications, Commun ACM 48, no 2, February 2005 30. Gladney HM, Principles for digital preservation. Commun ACM 49, no 2, February 2006 31. Bioinformatics: transforming biomedical research in medical care. Commun ACM 47, no 11, November 2004 32. Czaja SJ, Hiltz SR, Digital aids for an aging society. Commun ACM 48, no 10, October 2005 33. Goldschmidt PG, HIT and MIS: implications of health information technology and medical information systems. Commun ACM 48, no 10, October 2005 34. Mbarika VWA, Is telemedicine the panacea for sub-Saharan Africa’s medical nightmare? Commun ACM 48, no 10, October 2005 35. Riva G, Vatalaro F, Davide F, Alcañiz M (2005) Ambient intelligence: the evolution of technology, communication and cognition towards the future of human-computer interaction. IOS Press 36. Merrill D, Maes P (2005) Invisible Media: attention-sensitive informational augmentation for physical objects. In: Proceedings of the seventh international conference on ubiquitous computing, Tokyo, Japan. http://ambient.media.mit.edu/assets/_pubs/dmerrill_maes_ ubicomp2005.pdf 37. Ronchi AM, et al. Proceedings of the international expert meeting “Conservare il digitale”, held in Asolo on 29 Sept 2006. http://www.ndk.cz/dokumenty/asolo_memorandum.pdf/download 38. Borghoff UM, Rödig P et al (2006) Long-term preservation of digital documents: principles and practices. Springer. ISBN:978-3-540-33639-6 39. Ronchi AM et al (2008) In: Maiocchi M (ed) Design e Comunicazione per la Sanità. Maggioli Editore. ISBN:978-88-387-4321-5 40. ISTAG (2001) Scenarios for ambient intelligence in 2010 – final report, IPTS, Seville 41. ISTAG (2002) Strategic orientations and priorities for IST in FP6, ISTAG report 42. Mark Weiser’s ubiquitous computing webpage: http://www.ubiq.com/hypertext/weiser/ UbiHome.html 43. Mark Weiser’s website homepage: http://www.ubiq.com/weiser/ 44. Oracle Customer Relationship Management http://www.oracle.com/applications/customer-rela tionship-management.html

Chapter 2

e-Learning: How Teaching and Training Methods Changed in the Last 20 Years

The present section will outline the evolutionary path of teaching and learning methodologies in the last 30 years, devoting a more detailed analysis to the last 10/15 years, the so-called Internet era. The main aim of the first section is to provide the evolution of the scenario and some recent trends. The second part of the chapter describes the effects of this environment on young generations and, in more detail, the educational benefits and drawbacks. In the last 30 years many things changed. Pioneers and curious explorers of the digital domain left the arena to digital immigrants and more recently digital natives have come on stage. Teachers and Professors, mainly belonging to the digital immigrants community, are training people who have grown up with smart phones, the Internet and the social web. Is it really so evidently a different mind-set? Is it true that pupils refer to the Web for their own memory and basic knowledge? Do they really think: why do I need to memorize when Napoleon did surrender at Waterloo if I can click on Wikipedia? What about the social impact of the “internet generation”? Do they need to learn more about what was before and the evolution of computing? What about potential drawbacks and risks? How did and how do still trainers adapt their curricula methodology and pedagogy to the evolving environment? Is the way to transfer information and knowledge significantly different from the traditional one? Do we need to re-train trainers? How can we bridge the gap between the traditional way of thinking and the huge set of opportunities offered by the information age? Is creativity only constrained by our imagination?

© Springer Nature Switzerland AG 2019 A. M. Ronchi, e-Services, https://doi.org/10.1007/978-3-030-01842-9_2

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2 e-Learning: How Teaching and Training Methods Changed in the Last 20 Years

Introduction

Digital technology is changing the way we educate succeeding generations and train ourselves offering new opportunities to promote and distribute educational products and services. In order to better understand problems and issues related to education and learning it is useful to outline some of the most relevant achievements and milestones in the technological domain. Education, vocational training and lifelong learning play important economic and social roles. If we consider what happens in the European Union, the opportunities for living, studying and working in other countries make a major contribution to crosscultural understanding and personal development and realisation. Each EU country makes its own education policy, but the EU supports them in setting joint goals and sharing good practices. Future economic success depends on having a highly educated population, able to compete effectively in a globalised knowledge-based economy. Active contribution to education and training includes programmes to help people study, train, do a work placement or volunteer abroad, while promoting language learning and e-Learning. Among the above-mentioned contributions there is a website initiative entitled: “Teachers’ Corner: Inspiring teaching material about the European Union1”. It is your one-stop shop for a wide range of teaching material about Europe. Various EU institutions and other government and non-government bodies have produced the material in order to help young people learn about the European Union and its policies.2 At the European level we recognise at least three main actors dealing with culture and education: the European Commission, the Council of Europe and the European Parliament.3 The Education, Youth and Culture (EYC) Council brings together education, culture, youth and communication Ministers around three or four times a year. It usually adopts its decisions by a qualified majority (except for cultural affairs, where it acts unanimously) and in co-decision with the European Parliament. 1

http://europa.eu/teachers-corner/index_en.htm, last accessed February 2019. These websites, brochures, books, maps and posters explain what the EU is and what it does. They address many of the questions and challenges facing society today, for example, what can we do to protect our environment? How can we live together with peace and security for all? Whether you’re looking for inspiration for your lessons or concrete information on European history, citizenship, or something as specific as reducing individual energy consumption, you should find useful material here, tailored to the age group of your students. Just click below on the age group of your class to find the material best suited for your teaching requirements. You are also welcome to tell us what you think about the teaching resources on Teachers’ Corner. Click on “Your review” and then rate or comment on a resource. Have you developed a teaching resource about the EU? If so, why not click on “Submit” and send it to us? If it meets our criteria for inclusion, we will publish it on the website. 3 “The European Community's aim is to contribute to the development of quality education, the implementation of a vocational training policy and the flowering of Member States’ cultures, bringing the common cultural heritage to the fore, while fully respecting the responsibility of the Member States for defining the content of teaching and vocational training and organising education and vocational training systems, as well as their national and regional cultural diversity.” (EC website) 2

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The main role played by the European Union Institution is to provide a framework for cooperation between the Member States, which works by exchanges of information and experience on matters of shared interest, including all the action aiming to a better cohesion of European member states. Harmonisation and homogenisation of curricula together with mutual recognition of diplomas is one of the key roles. In addition they promote the shared background of European history and promote multilingualism. Nevertheless, the idea to share a common history is still a good “cultural mediation” case study. We already learned the lesson of the different points of view considered by different countries, many times strongly related with the popular sense of belonging. This doesn’t only relate to wars and political events but even to scientific and technological enhancements and innovation. I clearly remember the problem created by the attempt to create a universal encyclopaedia many years ago, the struggle among Popov, Meucci and Bell, supported by their home nations, as inventors of the telephone. Education, vocational training and lifelong learning play important economic and social roles. The European Community provides additional support to Member States in: student and professor exchanges,4 promoting cooperation between educational and training establishments, and in particular with regard to training in business; improving initial and continuing vocational training with a view to facilitating the integration of citizens into the labour market, their adaptation to industrial change and their possible vocational retraining; stimulating artistic and literary creation, including in the audio-visual sector.

2.2

The European State of the Art as It Appears from Statistics5

Eurostat6 elaborates on statistical studies on behalf on the European Union. Analysing the set of data on European education and training systems between 2001 and 2012, from when children start in school, until they leave as young adults, it emphasises major trends at each educational level in terms of enrolments, education expectancy, teacher characteristics and graduates. “From 2000 to 2009 there was a significant rise in children attending pre-primary education and students could on average expect to stay 17 years in education. The number of students in compulsory education has fallen sharply in many countries, particularly in Eastern Europe. There are relatively more men in vocational training whereas women dominate in tertiary education with notable subject-specific exceptions. Students spend more time in tertiary education but there have also been sharp increases in the number of tertiary education graduates.” Coming closer to today, “Key Data on Education 2012” is a joint publication with Eurostat and based on data collected through the National Units of the Eurydice 4

e.g. Erasmus Programme. The main source for statistical data and figures in this paragraph is Eurostat. 6 Eurostat http://ec.europa.eu/eurostat, last accessed February 2019. 5

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Network, Eurostat, and the PISA 2009 international survey. “The publication covers many of the priority areas for European cooperation in education and training (ET 2020) and the broader European strategy for smart, sustainable and inclusive growth over the coming decade (EU 2020). More specifically, the 95 indicators included in the report address the following topics: Demographic Context, Educational Structures, Participation, Resources, Teachers and Management staff, Educational Processes and Qualification Levels and Transition to Employment.” If we enlarge the vision to extra European countries, accordingly with the Eurostat 2011 report: the level of educational enrolment depends on a wide range of factors, such as the age structure of the population, legal requirements concerning the start and end of compulsory education, and the availability of educational resources. The earliest starting age of compulsory education among G20 members (excluding the EU-27) was 4 years old in Mexico, while the latest was 7 years old in Indonesia and South Africa; the range was similar among the EU-27 Member States. The youngest age for completing compulsory education in G20 members (excluding the EU-27) was 11 years old in Saudi Arabia while the oldest was 17 years old in Argentina and the United States; within the EU-27 the range was narrower, from 14 years old to 18 years old. Combining these two measures, the overall duration of compulsory education among the G20 members ranged from a total of 6 years in Saudi Arabia to 13 years in Argentina and among the EU-27 Member States from 8 to 13 years.

Source: Eurostat report EU-G20 Graduates by broad field of study, 2010

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Education is a key policy component of the Europe 2020 strategy; the strategy is outlined in the EU’s agenda for growth and jobs for the 2010–2020 decade. The EU’s education targets are interlinked with the other Europe 2020 goals as higher educational attainment improves employability, which in turn reduces poverty. The tertiary education target is furthermore interrelated with the research and development (R&D) and innovation target as investment in the R&D sector is likely to raise the demand for highly skilled workers. One of the goals of the Europe 2020 strategy is “reducing the share of early leavers of education and training to