A Journey towards Patient-Centered Healthcare Quality: Patients, Families and Caregivers, Voices of Transformation [1st ed. 2020] 978-3-030-26310-2, 978-3-030-26311-9

Table of contents :
Front Matter ....Pages i-xii
Understanding Patient and Family Engagement in Health Care (Jean Moody-Williams)....Pages 1-15
Consideration for Special Settings and Situations (Jean Moody-Williams)....Pages 17-27
Pursuing Continuous Quality Improvement (Jean Moody-Williams)....Pages 29-36
A Quest for Patient Safety (Jean Moody-Williams)....Pages 37-45
Consumer Information for Patients, Families, and Caregivers (Jean Moody-Williams)....Pages 47-59
Quality Measures for Patient, Family, and Caregiver Engagement (Jean Moody-Williams)....Pages 61-69
Considerations for Family and Caregivers and Crucial Conversations (Jean Moody-Williams)....Pages 71-79
Careers, Education, and Certifications in Patient and Family Engagement (Jean Moody-Williams)....Pages 81-89
Back Matter ....Pages 91-113

Citation preview

A Journey towards Patient-Centered Healthcare Quality Patients, Families and Caregivers, Voices of Transformation Jean Moody-Williams

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A Journey towards Patient-Centered Healthcare Quality

Jean Moody-Williams

A Journey towards Patient-Centered Healthcare Quality Patients, Families and Caregivers, Voices of Transformation

Jean Moody-Williams Transitions, Trust and Triumph Baltimore MD USA

ISBN 978-3-030-26310-2    ISBN 978-3-030-26311-9 (eBook) https://doi.org/10.1007/978-3-030-26311-9 © Springer Nature Switzerland AG 2020 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, expressed 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. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Preface

A Journey Toward Patient-Centered Healthcare Quality: Patients, Families, and Caregivers, Voices of Transformation provides valuable insight into emerging trends in healthcare delivery; patient, family, and caregiver engagement and the intersection of the two. It is unique in that it not only incorporates patients’ voice but also provides context in the application of patients’ families and caregivers in healthcare transformation and the future of healthcare models. It is intended to not only promote empathy toward patients but also challenge the reader to learn and think about the future of healthcare and the value of patient’s voice in policy making and decisions about healthcare. It provides valuable information on quality improvement, consumer experience, and emerging careers in this area with practical information and interventions. Clinicians and other members of the care team play a critical role in the evolving models of care and must stay abreast of emerging trend to ensure that patients’ needs are met, while contributing to meeting the quality and economic goals of the organizations and care settings in which they work. This book will help to ensure that they remain abreast of changing trends in quality improvement, quality measurement, cost, health information technology, and patient and family engagement so that they are able to lead their teams and organizations. Direct accounts from patients, family, and caregivers who want their “voices” heard are incorporated throughout the book. Baltimore, MD

Jean Moody-Williams

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Acknowledgments

I wish to acknowledge all that have contributed to the completion of this book which is intended to challenge how we think about the delivery of healthcare and how we incorporate the voices of patients, families, and caregivers. I acknowledge all the patients, families, caregivers, and health professionals that shared their very personal stories with the hope of transforming the healthcare system. Thanks to my family, including my husband Hendri, my daughters Tracey, Danielle, and Nicole, and my sons-in-laws who patiently watched me work through family dinners and vacations understanding the importance of this work for improving the lives of others. A special thanks to all the physicians, nurses, and other clinicians, and the quality improvement and patient safety advocates that go to work each day with a true desire to provide the best care possible for the people they serve. You are to be commended, and I can only hope this book will help to enhance the wonderful work you already do! Jean Moody-Williams

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Contents

1 Understanding Patient and Family Engagement in Health Care������������   1 2 Consideration for Special Settings and Situations������������������������������������  17 3 Pursuing Continuous Quality Improvement ��������������������������������������������  29 4 A Quest for Patient Safety��������������������������������������������������������������������������  37 5 Consumer Information for Patients, Families, and Caregivers��������������  47 6 Quality Measures for Patient, Family, and Caregiver Engagement��������  61 7 Considerations for Family and Caregivers and Crucial Conversations ����������������������������������������������������������������������������������������������  71 8 Careers, Education, and Certifications in Patient and Family Engagement��������������������������������������������������������������������������������������������������  81 Appendix A: Roadmap for Patient and Family Engagement in Healthcare Practice and Research: Actions You Can Do Today������������������������������������ 91 Appendix B: To Err Is Human: Building a Safer Health System�������������������� 97 Appendix C: Crossing the Quality Chasm: A New Health System for the Twenty-First Century���������������������������������������������������������������������� 105

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About the Author

Jean D. Moody-Williams, RN, MPP, enjoys a long history of improving quality, safety, and value in healthcare. Starting as a registered nurse, she gained clinical experience that informed her approaches in several policy positions at the private, state, and federal levels. She is currently the Deputy Director of the Center for Clinical Standards and Quality, Centers for Medicare & Medicaid Services, United States Department of Health and Human Services. She is a part of a leadership team that provides national direction on policy activities for Quality Improvement, Survey and Certification, Quality Measurement, Coverage and Analysis, Learning and Action Innovations Models, and many of the country’s Value Based Purchasing programs including the new Medicare Quality Payment Program (QPP). This program fundamentally changes clinician reimbursement for clinical care and promotes the adoption of advance payment models. Prior to joining CMS, Ms. Moody-Williams served as an executive at several entities working to improve care for patients and families including, the Maryland Health Care Commission (MHCC), the Emergency Medical Services for Children National Resource Center for Health Policy and Strategies, Quality Improvement Organizations, and a healthcare system in Dallas. She is a recent recipient of the Samuel J.  Heyman Service to America Medal awarded by the Partnership for Public Service and was recognized as the Federal Employee of the Year. Ms. Moody-Williams is also the recipient of the 2016 President of the United States Meritorious Rank Award and the 2018 President’s Distinguished Service Award. These awards are the highest given to Senior Executives demonstrating unparalleled leadership skills and a strong dedication to achieving tangible results. Ms. Moody-Williams is the author of the book, Transitions, Trust and Triumph: A Daily Devotion for Caregivers. She travels the country providing workshops for caregivers, families, and friends to help them prepare for the awesome responsibility of being a caregiver. She serves as a Deacon in her church and considers the care of caregivers and incorporates the voices of patients, family, and caregivers in her ministry. She is blessed by all she encounters. She had the wonderful opportunity to care for her mother and father prior to their transitions.

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About the Author

She received her Bachelor of Science in Nursing from Hampton University and a Master of Public Policy and Management from the University of Maryland, College Park. She has a wonderful family including a loving husband, three wonderful daughters, and sons-in-law.

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Understanding Patient and Family Engagement in Health Care

1.1

Defining Patient and Family Engagement

Recognizing the need for prevention and health care starts at birth and is usually handled by a parent or guardian. The responsible parties learn what is required to care for their child through reading, information from their clinicians, social media, and friends and family. As the child grows, they continue to get well-child visits, follow guidelines regarding immunizations and screenings, and follow requirements of schools, sports teams, camps, or other established requirements. For the most part, the child has little to decide in the care they receive given that guidelines are relatively straightforward, and parents choose whether to follow them or not. The child may develop some negative associations with seeking health care because well-child visits may be accompanied by injections and sick visits with what appears to be poking and prodding. As the child matures to college age or working age, they are likely to be healthy and may seek little medical attention. At this stage, much of the information regarding health comes from television, social media, trainers at the gym, or other sources. The information may center around staying healthy, eating the right foods, avoiding smoking, exercise, and other factors that contribute to one’s well-being. For many, the first time they must decide about health care may be the birth of their own child or caring for a parent or other loved ones. Very little prepares an adult to make healthcare decisions or to even inform them of their role in the healthcare decision-making process. Healthcare professionals may make various assumptions about what the person is bringing to the healthcare experience. There may be an assumption that the person knows very little about health care and will not be able to contribute to decision-making or there could be an assumption that they know quite a bit about health care and need little explanation to make a decision. There could be the assumption that the person wants someone else to make the decisions for them. There may be a feeling that the questions that they have are annoying or that they are a nuisance.

© Springer Nature Switzerland AG 2020  J. Moody-Williams, A Journey towards Patient-Centered Healthcare Quality, https://doi.org/10.1007/978-3-030-26311-9_1

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1  Understanding Patient and Family Engagement in Health Care

Given the range of possibilities that a person may bring to the healthcare experience, the only assumption that is safe to make is that healthcare professionals must talk to, listen to, and engage with the person that is seeking health care in order to find out their thoughts, values, knowledge, life situations, preferences, and goals. While nurses and other clinicians have always observed the foundational principle of talking to patients to build a plan of care, patient engagement in the era of healthcare transformation takes on a new meaning and level of importance. Patient and family engagement should not be limited to the nursing staff. All members of the healthcare team have a role to play to ensure coordinated care and improved outcomes. The role of the nurse in patient and family engagement is engrained in the theory of nursing care and nursing diagnosis which combines clinical information, scientific evidence, social and psychological factors, and other areas to provide patient-­ centered care. The nursing process and standard language to describe the nursing diagnosis are outlined in great detail by the American Nurses Association and NANDA international. While much progress has been made to engage patients in their care and provide the kind of information needed to introduce choice and competition into health care, there is still a great deal of work to be done. Patient and family engagement is a term used in health care today with many definitions depending on the organization and context. Following are a few of the descriptions and ideas about patient and family engagement: • Centers for Medicare & Medicaid Services (CMS)—Patients and families are partners and are critical in defining, designing, participating in, and assessing the care practices and systems that serve them to assure that they are respectful of and responsive to individual patient preferences, needs, and values. This collaborative engagement allows patient values to guide all clinical decisions and drives positive transformation in attitudes, behavior, and practice (Centers for Medicare and Medicaid 2016). • Agency for Healthcare Research and Quality (AHRQ)—Patient and family engagement creates an environment where patients, families, clinicians, and hospital staff all work together as partners to improve the quality and safety of care. Patient and family engagement encompasses behaviors by patients, family members, clinicians, and staff as well as organizational policies and procedures that support these behaviors (Agency for Healthcare Research and Quality 2017a). Research shows that when patients are engaged in their health care, it can lead to measurable improvements in safety and quality. Patient and family engagement improves many aspects of hospital performance, including quality, safety, financial performance, patient experiences of care, patient outcomes, employee satisfaction, and improved nursing time management. • Institute for Medicine—Health providers should place a higher premium on fully involving patients in their health care to the extent that patients choose. Clinicians should employ high-quality, reliable tools and skills for sharing decision-­making with patients, tailored to clinical needs, patient goals, social circumstances, and

1.2 Understanding the Patient Journey

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degree of control that patients prefer. Healthcare delivery organizations should monitor and assess patients’ perspectives and use those insights to improve care; establish patient portals to facilitate data sharing among clinicians, patients, and families; and make high-quality tools available for shared decision-­making with patients (Institute of Medicine 2013). There is frequent debate on terminologies such as patient, person, people, family, participant, caregiver, or other terms. There is also a debate among terms such as provider, clinician, facility, and physician. These terms are used interchangeably throughout the text to highlight the importance of the role rather than the title. The bottom line is that a person-centered approach recognizes that life is a continuum in which people take on different roles at different stages, sometimes as patients, sometimes as the caregiver, sometimes as an advocate of prevention, and many other roles. Whatever the current stage, the person’s thoughts, values, and decisions are of importance.

1.2

Understanding the Patient Journey

While standardized surveys have been used for many years to gather information on the patient’s experience during the delivery of health care, the industry is also beginning to use a variety of additional techniques and tools to understand the patient journey. One such tool is the use of human-centered design (HCD) to understand the journey and build a system that reduces the barriers and obstacles to receiving necessary care. Very generally, HCD is an iterative design approach by which observations are made and data is collected on a person or persons engaging with a system or process to develop or improve products, services, and experiences with the needs of the person at the center of it all. During the observation and data collection phase, challenges are observed and recorded throughout the journey to explore ways to remove the barriers or improve the process. Once a change is made, it must be studied again to ensure that it addresses the identified issues, and if not make additional changes. One example of this is the efforts underway at the Centers for Medicare & Medicaid Services (CMS), which is the agency in the USA responsible for providing healthcare insurance for millions of Medicare beneficiaries. Through an initiative called “Patients Over Paperwork,” they met with many beneficiaries and caregivers in their care settings, at their homes, and at State Health Insurance Program offices to understand healthcare services and transitions between settings (Centers for Medicare and Medicaid Services 2018). What CMS Learned: • People seek personalized and seamless transitions between care settings and providers. Many times, beneficiaries and their caregivers are bogged down by the complexity of managing health records, receiving fragmented or ad hoc t­ reatment, and receiving guidance to act on care plans that are difficult to implement.

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• People feel that the standardized system does not serve their needs and that health insurance coverage is confusing. They want a system that is customer focused, streamlined in delivery, and less restrictive in choice. • People often feel ignored by their providers and excluded from decision-making. • Beneficiaries and their caregivers need a system that gives support and compassion for their experiences, especially when faced with high stress or time-­ sensitive decisions. It is not enough to collect information, but you must also act on what you have learned. CMS has been working to address the burdens that they discovered. For example, they are focusing on empowering patients and providing them with the tools needed to make better informed healthcare decisions. Many of the burdens were addressed through new regulations, developing new tools to provide information, and exploring patient navigation programs. Many others are working on the patient journey. For example, the Veterans Administration (VA) uses HCD as one of the approaches that will help them transform their healthcare system to serve veterans best. HCD serves as a foundational approach in which veterans’ needs are the main focus during all stages in the development of products, services, and processes. They examine current programs to see if they were created with the veteran experience in mind. They will use HCD to improve their processes so that veterans interact with the VA in ways that are best suited to fulfill their needs and wants. When designing their programs, they consider the following factors (Veterans Affairs Center for Innovation 2015): • Desirability: Does the solution serve the needs of veterans? Does it improve the experience for veterans? • Feasibility: Can the solution be executed? What assets and capabilities must we improve or create to build it? Who else should we partner with? • Viability: Will the solution have a significant, positive impact on VA? How does it align with the VA goals and aspirations? For example, HCD was used to address the challenge of veteran’s confusion over how to provide feedback to the VA on their healthcare experience. The VA had multiple feedback systems in place, adding to the confusion. It was also challenging to get feedback to the right persons in a timely manner. To address this issue, they established a goal of creating a tool to route veterans’ input to the right employees so they can respond quickly and effectively. The VA reported that they used HCD to map key journeys through service lines from a veteran’s perspective and identified the moments that matter most to veterans. They conducted interview sessions to gather veterans’ and employees’ reactions to initial designs of the feedback tool and made improvements based on these reactions. As a result of these efforts, a user-friendly digital tool was designed to address veterans’ most pressing needs and the issues they encounter when

1.2 Understanding the Patient Journey

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interacting with VA. The tool can be accessed through a website link using a computer, tablet, or a smartphone—either directly after their encounter with VA or on their own time. They note that a back-end routing structure was created to address both veteran and employee needs by bringing feedback directly to the appropriate party. HCD has many other uses yet to be fully explored, such as the need for more efforts to determine how medical devices and technology design impact a patient’s experience. Often the design is done with the clinician in mind as the end user verses the patient as the one that is going through the experience. There are many tools available to assist clinicians in understanding and implementing patient and family caregiver engagement concepts within their daily work and within their organizational policies. The most important thing to remember in patient and family engagement is to listen to the voices of patients and families. Voices from Patients, Families, Caregivers, and Clinicians: Carolyn’s Story

I served for many years as a pediatric nurse with a desire to be a nurse starting even as a child reading many books on the fictional nurse character known as Cherry Ames. Many people were influential in my career path. I was fortunate to enter nursing at a time when primary nursing was the care delivery model. Each patient was assigned to a primary nurse and a secondary nurse. As the name implies, the primary nurse was assigned to the same patients whenever he/she was on duty. The secondary nurse was assigned to the patient when the primary nurse was off duty. It was the primary nurses’ duty to develop, implement, and evaluate the patient’s plan of care, communicate with other members of the healthcare team and the parents, as well as provide holistic care to the child and his/her family. This care delivery model ensured that there was continuity of care by the same staff. Staff and parents got to know each other very well. This was especially important because some of my patients were hospitalized for months. The first patient that I became attached to was DG, who was born with an omphalocele. I was DG’s primary nurse, so I took care of her every shift I worked. Consequently, I was able to develop a very good relationship with her young parents. Mr. and Mrs. G. spoke very little English. They were from Puerto Rico and had moved stateside about a year before DG, their first child, was born. The parents were initially petrified to touch her, but that fear gave way to touching and holding their baby after several weeks. Holding DG was awkward and required two people to get her out of the isolette. One person held the hyperalimentation and lipid IV lines and another picked up the baby and placed her on her parent’s lap. Although DG’s omphalocele was repaired successfully, she eventually developed short gut syndrome because a portion of her intestine had also been removed. With short gut syndrome DG eventually died from a combination of sepsis, dehydration, electrolyte imbalance, and probably generalized debilitation. Before DG died the surgeons and pediatricians had a very candid talk with her parents about her prognosis. They visited regularly but toward the

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end of her life their visiting time became shorter and shorter. They still asked to hold her. They stroked her skin and kissed her. One day the pediatrician called the parents and told them that DG had passed away. The parents came in to take care of business and to take her belongings home. We all cried together and hugged. They thanked me for taking care of their baby. I had taken care of DG for only 10 weeks, and I had come to love her. I felt so sad when she died. I also felt sad for her parents. They had anticipated her birth for 9 months and they were only able to bond with her a few hours a day for 10 weeks. DG’s parents were two of the most gracious people I have ever met. I don’t remember what type of support services they received, such as prayer from a chaplain or referrals for community follow-up by a social worker. I never heard from them after she died, but her memories live on. I learned several lessons or take-away points from caring for DG and her family. One lesson was that it is of paramount importance to communicate both verbally and nonverbally with patients and families and to demonstrate caring, commitment, and compassion through behavior. Patients and families know when care providers are genuine and truly care about the service and support they render. Another take away was that the emotions DG’s parents exemplified were influenced by their sociocultural influences. DG’s parents were frequently sad, and they cried at her passing away. They were a practicing Catholic couple that used their religion to help them get through her months of illness. However, this may not be the coping mechanism for some people in another culture, so care providers must be sensitive to cultural differences. One size does not fit all. A third take away was that poignant memories might fade, but pictures help to relive pleasant memories. I did not have an ongoing relationship with DG’s parents after her death, but I sometimes look at the pictures I took of her and her parents some 46 years ago! I still remember how sweet she was. I hope that their pictures of DG have been a pleasant reminder of their daughter, not an unpleasant one. It’s important for care providers to accept the ways that parents may choose to remember their loved ones. Not all parents choose the same methods to create memories.

1.3

Mapping the Patient’s Journey

Mapping the journey of SHM© shows the many opportunities that existed for breakdowns in care and poor coordination. Patient and family engagement was important in every segment of the journey. Often the information was not shared from place to place. She experienced several preventable errors and episodes of fragmented care along the way. Likewise, there were moments when she and her family were

1.4 Frameworks, Tools, and Resources to Promote and Encourage Family-Centered…

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SEVEN MONTH JOURNEY OF PATIENT SHM Long Term Care Inpatient Admission

Emergency Department

Home

Inpatient Admission

Inpatient Rehab

Intensive Care

Long Term Care

Home Hospice

Home

Fig. 1.1  Journey map of SHM (Adapted from Transitions, Trust, and Triumph by Moody-­ Williams, J.D.). SHM began an unexpected health care journey that concluded after seven months of moving from one facility to another. The map shows the facilities involved, but each stop has a story and an opportunity to learn how to engage with the patient and the family. Nurses, physicians, therapists, and other health care clinicians were instrumental along every step of the journey. Each stop has its billing, admission, discharge, treatment plan, medications, social services, and other processes that require navigation

thoroughly engaged by the clinicians. There were times when the information was not shared between facilities, even when it was clear that the care at first facility led to the readmission at the second facility. The second facility did not inform the first place of the error. This is an event that likely happens more frequently than one might think given professional courtesy, concerns about liability, inability to transfer information from one place to the next, and any other myriad of circumstances. Patient-centered care means that the needs of the patient are prioritized over all these reasons. Her journey is mapped below. Figure 1.1 reflects her journey throughout the healthcare system (Moody-­ Williams 2012).

1.4

 rameworks, Tools, and Resources to Promote F and Encourage Family-Centered Care

Ensuring patient-centered care and patient and family engagement can’t be left to chance. Many resources, frameworks, and tools have been developed to help to guide the activities surrounding full incorporation of the principles of patient-­ centered care into an organization’s culture. As with any endeavor, concepts and practices should be planned, implemented, evaluated, and revised as necessary to ensure success. Metrics of success should be established according to the organizational goals. Any evaluation of the success of comprehensive patient and family engagement must include the voice of the patients to determine the effectiveness of implementation.

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1  Understanding Patient and Family Engagement in Health Care

1.4.1 R  oadmap for Patient and Family Engagement in Healthcare Practices and Research The Gordon and Betty Moore Foundation worked with the American Institute for Research (AIR) to create the “Roadmap for Patient and Family Engagement in Healthcare Practice and Research” (Carman et al. 2014). Informed by the knowledge, experiences, and evidence of over 70 individuals and 60 organizations, the roadmap includes specific actions that can be taken to partner with patients and their families to improve how care is delivered. They note that meaningfully engaging patients and families at every level leads to: • Improvements in patient safety and quality—When health professionals partner with patients and families, patients make more informed choices about their care, use medications more safely, practice more effective self-management, contribute to infection-control initiatives, and help reduce medical errors—all translating into measurable improvements in the quality and safety of care. • Better patient experiences and satisfaction—Organizations that engage patients and families receive higher patient ratings of care and Consumer Assessment of Healthcare Providers and Systems (CAHPS) scores, especially for improved communication with doctors and nurses. • Increased health professional satisfaction and retention—Patient and family engagement strategies improve health professionals’ satisfaction with their work, helping to recruit and retain high-quality talent. • Better health outcomes—Engaged patients have better pain control and symptom resolution, better emotional health, significantly fewer preventable hospital readmissions, better management of chronic diseases, and overall improved functioning. • Lower healthcare costs—Together, these benefits can substantially lower healthcare cost. This roadmap lays out the path to broader patient and family engagement by providing specific strategies that are generalizable, usable, effective, executable, sustainable, and scalable and highlights where more innovation is needed. When implemented across the full spectrum of health care, these strategies can help achieve the goals of better patient experiences of care, better population health, and lower costs. The roadmap identifies eight change strategies that represent both proven practices and promising pathways to meaningful patient and family engagement and the end goals of improved health and health care. In addition, the framework includes tactics and milestones for leaders of healthcare organizations; front-line clinicians; health-related professional and trade associations; patients, family members, and caregivers; individuals involved in health profession education; insurers; employers; researchers; funders; policymakers; and consumer advocacy groups. The following eight change strategies describe priority areas for action to advance patient and family engagement in practice and research. They reflect areas

1.4 Frameworks, Tools, and Resources to Promote and Encourage Family-Centered…

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with significant opportunity for growth and change and where improvements can help drive progress toward key patient and family engagement-related milestones and outcomes: • Patient and family preparation—Educate, prepare, and empower patients and families to engage effectively in their health and health care. • Clinician and leadership preparation—Educate, prepare, and empower clinicians and healthcare leaders to partner effectively with patients and families. • Care and system redesign—Redesign system processes, policies, and structures to provide opportunities for and support of partnerships between patients, families, and the healthcare team. • Organizational partnership—Redesign healthcare organizations to make patients and families part of the governance structure. • Measurement and research—Create measures and conduct research to improve care, facilitate changes in processes, and assess the relationships among engagement, experiences, and outcomes. • Transparency and accountability—Make data and information transparent to promote organizational accountability for quality and safety and to enable patients and families to be active in their health and health care. • Legislation and regulation—Encourage patient and family engagement through regulation and legislation. • Partnership in public policy—Identify and provide opportunities to integrate patient and family perspectives into public policy. These change strategies and the accompanying tactics are intended to ignite change, but it’s also important to think about the simple things that can be done right now that will make a difference. Appendix A outlines tangible, discrete actions that can be taken right away for patients, family members, clinicians, organizational leaders, policymakers, insurers, employers, or researchers.

1.4.2 Family-Centered Rounding AHRQ has published materials on family-centered rounding (FCR), which is a key patient engagement strategy for hospitalized children. They note that FCRs have become the standard of care in many facilities, and they funded the development of an FCR Toolkit designed to increase family engagement in rounds for hospitalized children. It is intended for use by healthcare providers initiating FCR and operationalizing optimal practices in the setting of existing FCR, including physicians, nurses, hospital administrators, and quality improvement personnel. The FCR Toolkit was developed at a pediatric academic medical center with extensive input from family representatives, pediatric healthcare professionals at the American Family Children’s Hospital, and human factors and systems engineering researchers at the University of Wisconsin-Madison (Agency for Healthcare Research and Quality 2017b).

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1  Understanding Patient and Family Engagement in Health Care

1.4.3 G  uide to Patient and Family Engagement in Hospital Quality and Safety Another tool supported by AHRQ is the Guide to Patient and Family Engagement in Hospital Quality and Safety. The Guide focuses on four primary strategies for promoting patient/family engagement in hospital safety and quality of care: • Encourage patients and family members to participate as advisors • Promote better communication among patients, family members, and healthcare professionals from the point of admission • Implement safe continuity of care by keeping the patient and family informed through nurse bedside change-of-shift report • Engage patients and families in discharge planning throughout the hospital stay As a first step in developing the guide, AHRQ reported conducting an environmental scan assessing the current literature, tools, and resources available to engage patients and families in their care in the hospital setting. The guide includes: • A framework that describes how patient and family engagement can lead to improved quality and safety • A description of factors that influence patient and family engagement, including characteristics and perspectives of patients, families, healthcare professionals, and hospital organizational and cultural factors • Hospital-based methods and materials currently being used to engage patients and families in the safety and quality of care • An analysis of what materials are needed but do not currently exist (Agency for Healthcare Research and Quality 2017c)

1.4.4 The Nurse Bedside Shift Report The goal of the Nurse Bedside Shift Report strategy is to help ensure the safe handoff of care between nurses by involving the patient and family. The patient defines who their family is and who can take part in the bedside shift report (Agency for Healthcare Research and Quality 2017d). Hospitals educate nurses and families on how to conduct bedside shift reports. On the day of admission, the bedside nurse or another hospital staff member briefly explains the process, invites the patient and family to be part of the bedside shift report, and gives the brochure on bedside shift report to the patient. At each shift change, shift report happens at the patient’s bedside, and the nurses invite the patient and family or friends to take part in the report. According to AHRQ, the bedside shift report can improve: • Patient safety and quality as the bedside shift report is an opportunity to make sure that there is effective communication between patients and families and nursing staff

1.5 The Patient-Centered Outcomes Research Institute (PCORI)

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• Patients’ experience of care improves after implementing the bedside shift report. Hospitals reported an increase in patient satisfaction scores and improvements in the nurse-patient relationship • Nurse staff satisfaction as they feel they are meeting both the clinical needs and engagement needs of the patients and families • Time management and accountability between nurses as after implementing the bedside shift report nurses have reported a better ability to prioritize their work or cases during their shift and an overall decrease in staff time

1.5

 he Patient-Centered Outcomes Research Institute T (PCORI)

The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. The mission of PCORI is to help people make informed healthcare decisions, and it improves healthcare delivery and outcomes, by producing and promoting high-­ integrity, evidence-based information that comes from research guided by patients, caregivers, and broader healthcare community (The Patient-Centered Outcomes Research Institute 2012). Since December 2012, PCORI has funded hundreds of studies that compare healthcare options to learn which works best, given patients’ circumstances and preferences. Of note is the fact that PCORI includes patients and other healthcare stakeholders throughout the research process so that the resulting evidence will address their most important questions and concerns. PQORI has supported several comparative effectiveness research activities. PCORI has underscored the expertise that patient partners provide. They note that their experience as a person with an illness or injury or the caregiver or family member of such a person offers significant value.

Voices from Patients, Families, Caregivers, and Clinicians: Susie’s Story

I soon found that working within the medical system is not always about what you know, who you know, or the names that you drop. For even with my healthcare background as a registered nurse and quality improvement professional, there are just times in the system when you are lost in the enormous machinery of patient care. It was hard to imagine that my mom went through nearly every adverse medical event that you can think of including acquiring a stage four pressure ulcer, a urinary tract infection associated with a catheter, an antibiotic-resistant infection, dehydration, reaction to her medication, and the list goes on. How is it that this could be happening to me? Usually, I am a generally quiet and humble person, not given to thinking more highly of myself than I ought, but this was my mother, and I didn’t see the progress that I expected. I thought it was time to pull out the stops and go down the road of “Don’t these

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1  Understanding Patient and Family Engagement in Health Care

people know who I am?” I am a healthcare professional working in the system. I was lost and perplexed about how this could be happening. I remember after one bout of “Don’t you realize that just 3 weeks ago she was walking and packing a suitecase for a trip and now she can do none of those things” and “let me speak to the medical director,” and seeing that no matter how hard I tried her story was not being adequately communicated from shift to shift, I became extremely frustrated. I felt completely helpless. It was during these times of helplessness that the importance of patient and family engagement, connecting the dots, and being an engaged patient and advocate of a patient became very real to me. I realized that we all have a part to play in this partnership, and it’s not one in which you meekly stand by as an observer. Healthcare professionals must be open to questions, and patients and families have to feel free to ask them. One clinician understood that patients may be reluctant to ask questions so he gave my mother a business-size card that said if you still have your urinary catheter in after 3 days, please feel free to ask me why and whether it can be removed. In another situation, I was told that my mother needed a central line catheter placed. I boldly asked what protocol they would be using to insert the catheter and whether they would be following the recommended standard which has shown to reduce infection. The person that I was speaking to could not answer the questions, so I insisted that I talk to someone that could. Unfortunately, not everyone will know what questions to ask or to whom to ask. It is in those times that the clinician’s role in assessing the patient and family’s information needs is one of the only things that can help. Many times, the answer lies with the patient and families.

1.6

I nvolving Patients, Family, and Caregivers from the Bedside to the Board Room

The conclusions from the various studies, tools, and frameworks all lead to the fact that the best way to ensure meaningful integration of patients and families into the engagement process is to seek their input in every aspect of the care delivery process. These combined resources lead to consideration of the following questions, actions, and discussion starters when incorporating patient and family engagement into an organization: • What thoughts, opinions, biases, and experiences are you bringing to the discussion with the patient and their family? • What is the knowledge that they bring to the discussion? What do they know and what do they want to know? • What has been their experience with the healthcare system in the past, and how is that impacting this current experience?

1.6 Involving Patients, Family, and Caregivers from the Bedside to the Board Room

13

• Ask for their input on their goals for treatment, and what do they want to get out of the treatment plan. How much do they want to be a part of the treatment process, and what are they basing their decisions on? • Make sure that the patient understands the options for treatment, the pros and cons of each, and the likely outcome given the decision that is made. • What tools should be used for the care decision process and in what format? Have you considered the diversity of the population served and cultural norms and values that may be of importance and how to integrate them into your engagement activities? • What are their home situations, and what is impacting their decision-making? Are there certain social determinants of health that should be considered, and is there a need for a connection to community resources? • How will you know that you have engaged them in the process? How will you know that their goals have been met? What are the measures of success that you will use? • Involve them in the discussion of their conditions during rounds. Don’t talk as if they are not in the room or whisper to others about them during rounds. • Be sure to tell their story at the end of the shift report. Often just the vital signs or clinical information is shared, but their story is not shared, and families must repeat them multiple times to different people leading to a feeling that no one is really listening. • Listen to the patient and family when they tell you that something seems wrong or seems right. Engagement in Policy and Procedure Development • Create opportunities for patients and families to participate in advisory councils to help create policies for the facility or organization. • Have patients and families serve as peer mentors for other patients if they are inclined to do so. • Create opportunities for patients and families to provide input into organized efforts such as speaking at Grand Rounds and attending the clinical staff meetings. • Develop innovative ways to include family members whose location may not physically be in the vicinity but whose thoughts are important to the patient. • Have patients review and advise on the educational materials and give feedback as to how they can be improved. Organizational and Government Engagement • Invite patients and family to attend policy discussions and healthcare conferences. Ensure that they have a speaking role. Try to invite more than one patient so they do not feel outnumbered. • Give the invited patients and families some time together in sessions that are uniquely for them but be sure to integrate them in any other session for which they wish to participate. Provide facilitation for organizing the patient and family session just as you would for a professional session.

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1  Understanding Patient and Family Engagement in Health Care

• Remember that they may be active patients and thus trying to manage their illness while at the same time trying to fulfill their obligations for the meeting. Ensure that you have a plan in case they should become ill or require treatment at the meeting. • Try to reduce the number of acronyms that are used so that they can participate in the conversation. • Include patients and families on the program and policy planning committees versus handing them an agenda that is already developed. Be sure to incorporate their input into the final policies and procedures that are developed by the organization.

1.7

Summary

Considerable attention has been given to promising methods of engaging patients, families, and caregivers in their healthcare decisions. New tools and strategies have been developed to encourage engagement in aspects of performance, including quality, safety, financial performance, patient experiences of care, patient outcomes, employee satisfaction, and improved nursing time management. While much progress has been made to engage patients in their care and provide the kind of information needed to introduce choice and competition into health care, there is still a great deal of work to be done.

References Agency for Healthcare Research and Quality Guide to patient and family engagement in hospital quality and safety. Content last reviewed February 2017. 2017a. http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/index.html. Accessed 22 May 2019. Agency for Healthcare Research and Quality. Family-centered rounds toolkit. Content last reviewed in December 2017. 2017b. http://www.ahrq.gov/professionals/quality-patient-safety/ patient-family-engagement/fcrtoolkit.html. Accessed 26 May 2019. Agency for Healthcare Research and Quality. Guide to patient and family engagement in hospital quality and safety. 2017c. http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/index.html. Accessed 26 Mar 2019. Agency for Healthcare Research and Quality. Nurse bedside shift report. http://www.ahrq.gov/ professionals/systems/hospital/engagingfamilies/index.html. 2017d. Accessed 26 Mar 2019. Carman KL, Dardess P, Maurer ME, Workman T, Ganachari D, Pathak-Sen E.  A roadmap for patient and family engagement in healthcare practice and research. (Prepared by the American Institutes for Research under a grant from the Gordon and Betty Moore Foundation, Dominick Frosch, Project Officer, and Fellow; Susan Baade, Program Officer.) Gordon and Betty Moore Foundation, Palo Alto, CA. 2014. www.patientfamilyengagement.org. Centers for Medicare & Medicaid. Person and family engagement strategy. 2016. https://www.cms. gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/QualityInitiativesGenInfo/ Downloads/Person-and-Family-Engagement-Strategic-Plan-12-12-16.pdf. Accessed 22 May 2019.

References

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Centers for Medicare & Medicaid Services. Patients over paperwork newsletter, November 2018. 2018. https://www.cms.gov/Outreach-and-Education/Outreach/Partnerships/Downloads/ PoPNovember2018.pdf. Accessed 25 May 2019. Institute of Medicine. Best care at lower cost: the path to continuously learning health care in America. 2013. http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2012/ Best-Care/BestCareReportBrief.pdf. Accessed 25 Mar 2019. Moody-Williams JD. Transitions, trust and triumph: a daily devotional for caregivers. June 2012. The Patient-Centered Outcomes Research Institute. Our story, mission, and vision. May 2012. https://www.pcori.org/. Accessed 27 May 2019. Veterans Affairs Center for Innovation. Designing for veterans, a took-kit for human-centered design. October 2015, Version 1.0.

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Consideration for Special Settings and Situations

2.1

 atient and Family Engagement for Persons P with Multiple Chronic Conditions (MCC)

Patient engagement is critically important for persons with multiple chronic conditions to ensure care coordination and holistic care, and to avoid unintended consequences that occur when not considering the needs of patients in their entirety. The U.S. Department of Health and Human Services (HHS) has created materials specifically focusing on the importance of patient and family engagement for persons with multiple chronic conditions (U.S. Department of Health and Human Services 2015). The curriculum notes that persons living with multiple chronic conditions usually require complex care delivered in primary care settings, with the ongoing involvement of specialist providers. They note that chronic conditions are conditions that last a year or more and require ongoing medical attention and/or limit activities of daily living. They include physical conditions such as arthritis, cancer, and HIV infection. Also included are mental and cognitive disorders, such as ongoing depression, substance addiction, and dementia. HHS notes that a holistic approach should address multiple physical health problems, medication management, development of treatment plans, home, and community-­based services, as well as complex psychosocial needs, including coordination of financial resources. This type of care requires a team approach that includes patients, their families and caregivers, and their healthcare team. Such partnerships are essential for priority setting, communication, satisfaction, and coordination of care. Fostering these partnerships, focusing on the context in which a person is managing MCC daily, and developing a person-centered care plan that is based on the individual’s treatment and outcome goals are key to providing this type of care. HHS notes that person- and family-centered care for patients means changing the conversation from “what is the matter” to “what matters to you.” It is important that person- and family-centered care recognizes that emotional, social, and developmental support is central to maximizing the health and well-­ being of patients and their families and caregivers. Person- and family-centered care © Springer Nature Switzerland AG 2020 J. Moody-Williams, A Journey towards Patient-Centered Healthcare Quality, https://doi.org/10.1007/978-3-030-26311-9_2

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respects the values, needs, and preferences of patients and is geared toward understanding a shared goal of optimal function, health, and quality of life. Patients with multiple chronic conditions are faced with the task of coordinating care between multiple providers, several different laboratory tests, and clinical appointments as noted in the vignette below. Voices from Patients, Families, Caregivers, and Clinicians: Alexis’s Story

Patient Alexis had been seen by her primary care provider for her treatment of diabetes, hypertension, and hypercholesterolemia for many years. The diabetes was becoming more challenging to manage, and she was referred to an endocrinologist who began to manage the diabetes by changing the medication from metformin to a combination drug of sitagliptin and metformin and by reinforcing the importance of diet and exercise. At the same time, she developed a tear in the labral of the shoulder and was under the care of an orthopedist. This required the administration of a steroid injection and physical therapy. Her blood glucose became elevated with the use of the steroid. The injection did help and allowed her to participate fully in her physical therapy, but the pain remained. Upon follow-up, the orthopedist wanted to provide another steroid injection, but she was reluctant because of the last experience of an elevated glucose. While traveling, she noticed clear pustules on her eye that started as being itchy and later crusted and became painful. She went to an urgent care center, and it was diagnosed as a bacterial infection. She was provided a gentamycin ophthalmic solution which resulted in no improvement and continuing pain. She visited the emergency department, and they confirmed that the presentation of the lesions was not consistent with a bacterial infection and in fact was shingles. Alexis was prescribed an antiviral, which was eventually successful in addressing the issue. She returns to her primary care provider who notes that her blood glucose is elevated but she tells Alexis that she is not managing the diabetes anymore so she should reach out to the endocrinologist. Alexis also requests a shingles vaccine but is notified that there are none available and difficult to get and she could not be prioritized for the vaccine. She would be put on the list with all other patients who may be at risk one day for developing shingles. She has another episode of shingles while waiting for her turn. She returns to the endocrinologist who notes the elevated blood glucose, and she explains the events that occurred in the last 6 months. The endocrinologist notes that he wished someone had contacted him as there are ways to manage diabetes when on steroids so that she could have continued to get the full benefit of the physical therapy. In the above-referenced vignette, the patient had multiple chronic conditions and acute condition co-occurring. She saw several clinicians in a short period. Overall,

2.1 Patient and Family Engagement for Persons with Multiple Chronic Conditions…

19

each clinician performed their own responsibilities well but the only thing connecting her care journey was the patient herself. None of the clinicians knew about the interval events and the importance of connecting one course of treatment with the other. In this case, engagement of the patient was essential for each of them to address their area, and avoid duplicative tests and missed opportunities. Integration of a person- and family-centered approach requires training of healthcare professionals. By sharing evidence-based health information, patients receive timely, complete, and accurate information to support active participation in care and decision-making. The benefits of incorporating the perspectives of patients and their families and/or caregivers include better outcomes, improved care, and increased satisfaction. The HHS curriculum is available for clinicians and educators for use and emphasizes the importance of clinicians documenting patient’s preferences, beliefs, and values, as well as involvement in care and treatment decision-­ making. It is necessary to ask the right questions to help patients and families to prioritize their preferred health outcomes, coordinate their care, and partner with healthcare providers to ensure a whole-person approach to care. Inquiries should be made to determine thoughts on: • Their understanding of each of the multiple chronic diseases, how they impact each other, and contraindications in treatment and medications • How they maintain records to make sure that they alert each of their providers to issues in care • What are their expectations of treatment and care coordination related to alleviating pain, maintaining physical function, maintaining social function, and maintaining cognitive function It is also important to revisit goals with the patient, families, and caregivers as they may change over time as the health status changes. Voices from Patients, Families, Caregivers, and Clinicians: Arthur’s Story

I write this story not solely from a caregiver’s standpoint, but also as a wife of my spouse, whose name is Arthur. My husband’s long-term care began after the 2012 nor’easter storm. That storm was the second storm that generated a flood that forced us out of our apartment. It was a miracle we survived again! For nearly 5  months we lived in a hotel. Then we had a ray of light when Medicaid opened both our cases. It was an exciting time because finally help was on the way! Since 2012, countless personal care assistants (PCAs) and certified nursing assistants (CNAs) have entered and exited our home. While some of the care was great, often the caregivers were late for work, never showed up, or provided less than adequate care. I noticed a repeated pattern in the behaviors of not only the aides but also the agencies that employed the aides. These events disrupted our household.

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2  Consideration for Special Settings and Situations

Working with patients in the home requires someone that is effective, caring, compassionate, and knowledgeable. The story that stays in my mind is the one experience in which we had an aide that showed none of these qualities. She lacked an understanding of the pressures of having a spouse with multiple chronic conditions needing 24-h care and all the things that must be managed as a family caregiver. The first day that she came to work with us was on a Tuesday. The agreed-upon schedule included Tuesdays (6  h), Thursdays (6  h), Saturdays (4 h), and Sundays (8 h). Mondays, Wednesdays, and Fridays are dialysis days, ergo, 3  h, short days. Her first day was Tuesday. At our first meeting, she seemed nice and responded positively. But it was the second day, that torturous Thursday, that I will never forget. She clocked in and sat down and wasted an entire precious hour complaining about the care plan. I explained the routine and showed her the detailed care plan from the agency. She was still not satisfied. She began complaining about the agency and what information that had or had not given her. By this time, I figured that she absolutely did not want to work. Nonetheless, she was there to work, so to end the discussion, I reminded her that it was time for Arthur’s bath and that I would call the agency to inform them of her discontent. Once she agreed, I retreated to another room to take care of a few things. I was expecting to hear water running and Arthur in the shower. I knocked on the door, and he answered. He was not showering; he was sitting on the commode. I asked him the whereabouts of the aide, and he responded by saying that he did not know. I looked in the bedroom to see if she was dressing the bed. Nothing. Hmmm. I went to the kitchen, perhaps she was getting his supplement. Nothing. The front door was unlocked, so I opened the door and looked to see if maybe she was taking a break. Nothing. Her car was gone. I called the agency, and the scheduler said that when she returns to let her know that she should call the agency. In an astonishing conclusion to that day, the aide had left him sitting on the commode, walked out without saying a word, and left the door unlocked, with Art’s and another client’s paperwork on top of the loveseat. We never heard from her again, and the agency said that she never returned there either. As a primary caregiver and former home healthcare worker, I wholeheartedly believe that caregiving is a special and extraordinary calling. No one should be a victim of unprofessional, ineffective, or inefficient care. Remember that the people you are caring for are “fearfully and wonderfully made” regardless of their condition and your services are crucial to their well-being.

2.2 Intensive Care

2.2

21

Intensive Care

Engaging patients and families during the time of intensive care treatment is always challenging but has evolved over the years to be much more inclusive of families and friends even during the critical phases of care. Most intensive care units still have a series of rules that must be followed regarding the number of visitors that can be in the room at one time, processes for signing in, and the expectation that family members leave the room during certain complex processes. All of these requirements may have evidence supporting the need; however, they should be reviewed frequently to find the right balance between the need for lifesaving care and the benefits that may come from engaging and connecting the patient and their family. Often clinicians assume that they know what patients and families find most valuable as it relates to information; however, the assumption may not always be correct. The only way to really know what is most important to the patient and their family is to have a meaningful discussion about the expectations and the goals of care. There may be many different circumstances surrounding the intensive care stay that will dictate the kind of interaction the clinician staff may have with the patient and family. There may be the circumstances in which a patient has just completed a very complex surgical procedure and close monitoring is required to ensure a rapid observation of downward trending of important clinical symptoms. The expectation may be that the person will fully recover based on the expected course of recovery. In this case, the clinicians are able to confidently state a favorable outcome, particularly after a certain critical point has passed. The family has reasonable hope that things will be back to normal again in the immediate future. This may also be the case if the family member has had a previous stay in the intensive care unit with good results. The second situation is when the condition is critical for any number of reasons (such as in the case of an automobile crash) and the situation is described as “touch and go.” The patient and the family don’t know what to expect and may be frightened, hopeful, prayerful, and confused. They may not be exactly sure what to do or what their role is in the situation. They are more likely to feel helpless in that they don’t have clear answers, and neither does the clinician community. Yet another situation in the intensive care unit occurs when the realization sets in that little is to be expected from continuing the advance care and that a decision to discontinue life support is imminent. This is a very different type of involvement for the patient than the first scenario. Even after the critical period has passed, it is important to interact with patient and families to recognize and address what has become known as post-intensive care syndrome. Once leaving the ICU, patients and families may continue to have emotional and physical limitations associated with the ICU stay. Identification of these concerns may help the clinicians to understand certain clinical and psychosocial manifestations occurring in the treatment plan. Regardless of the initial stage, it is important to remember that engagement of the patient and their family is an important part of the care process. Family members must be prepared upon arrival to see their loved one with monitors and tubes that are

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unfamiliar to them. Taking the time to explain what they may expect to see upon entering the room and allowing them to ask questions will help with the preparation. Patients may also react to the reaction of the family members. Patients and family members may suffer from depression, anxiety, and stress-related disorders while at the same time trying to adjust to critical health-related situations. Clinicians should discuss with the patient or their family members when possible to determine their personality outside of the ICU setting. Do they like to have a lot of people around? Are they generally very private? Do they want to have on the television? Do they prefer music? How important is religion to them? What are the things they value most? Knowing their story can help the clinician judge how to manage the patient’s room and look for clues that they may be exhausted and need quiet time, or they may need the touch of a loved one. Voices from Patients, Families, Caregivers, and Clinicians: Regina’s Story

My introduction to nursing came via my mother, Mary. I grew up not really understanding what she did daily, but I knew she went to work to help sick people. Family members and friends would always ask if I planned on following in her footsteps when I grew up. I would always reply with a confident “no.” In the Fall of 1996, I entered the University of Michigan—Ann Arbor as a kinesiology major and joined the Varsity Volleyball Team. At the beginning of the season, the team went to visit patients at the Mott Children's Hospital. It was that short visit that sparked the flame that would begin my nursing career. I enjoyed the visit and left wishing I could do more than just sign posters and volleyballs for the patients. I soon signed up as a Children’s Hospital volunteer on the weekends and loved it. By the end of freshman year, I was setting up a meeting with an academic advisor to change my major to nursing. Almost 22 years later, I have 15  years of intensive care and 2  years of interventional radiology nursing experience and plenty of stories to share and lessons learned along the way. Registered nurses have such a unique role in patient and family engagement. For every patient that we meet, usually, the first thing we say is “Hello. My name is … I’ll be the nurse taking care of you today.” At that moment we are not only introducing ourselves, but we are also essentially asking that patient to put their trust in us that everything will be okay. The patient’s chart can provide demographics, medical history, vital signs, and lab work. What it does not share are things like any anxiety or fear the patient may have, if they have previous traumatic hospital experiences, or if they are in the midst of dealing with family drama. That is why it is incredibly important to listen to the patient, family member, or caregiver. Listening to their voices helps us to have a greater understanding of what it is they are feeling and experiencing. That allows us to have a greater appreciation for the fact that we are not just treating a diagnosis, but

2.3 Long-Term Care Settings: Family and Resident Engagement

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we are caring for a whole person. Often, we are used as a sounding board or an unbiased ear. They sometimes share information with us that they would like to keep from family and friends. This allows them to be vulnerable with their thoughts and feelings. The nurses’ caring manner allows them to be comfortable sharing any fears or anxieties they may have. The nursing profession itself is a universal symbol of compassion. Nursing has always been regarded as one of the most respected, compassionate, and trustworthy of professions. One thing that I have learned over the years is never to underestimate the impact that we have as nurses. You never know if things like one touch, one smile, one hug, and taking an extra minute to listen will change the course of a patient’s hospital experience. I do not believe in chance encounters. There is an old saying that “People come into your life for a reason and a season.” The same is true in the field of nursing; even though we come across a lot of people in the course of our workday, you may never know whose life you may have impacted in a meaningful way.

2.3

 ong-Term Care Settings: Family and Resident L Engagement

The Centers for Medicare & Medicaid Services (CMS) notes that family and resident engagement in the long-term care setting means that families and residents are involved in activities intended to enhance the quality of life, quality of care, and safety for residents. Quality activities in nursing homes vary but usually include: • Identifying problems as well as areas for improvement in the delivery of care and services • Identifying and addressing safety concerns in the environment • Making improvements that will enhance the quality of life for residents in the nursing home They note that being involved ensures that nursing home staff understand and respect the family’s choices, dignity, and rights to purposeful living. Oftentimes family members are the primary advocates for loved ones in nursing homes. Given the long-term nature of the stay, families may be in and out of the facilities many times a day, during all hours of the day. Engagement supports the residents and families’ participation in decisions about the best approaches to care. It helps facilitate the family and resident getting to know the nursing home staff and their roles as well as the team getting to know the resident’s needs and preferences (Centers for Medicare and Medicaid Services n.d.).

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2  Consideration for Special Settings and Situations

CMS offers the following tips to residents and families to encourage them to participate in their care: • • • • • •

Regularly speak with nursing home staff and leadership. Share your ideas for improvement as well as concerns. Recognize staff and leadership for a job well done or for positive changes made. Share concerns with nursing home staff as soon as they arise. Offer potential solutions, and make sure that they are concrete and simply stated. Participate, when possible, in nursing home committees such as dietary, safety, and/or quality assurance committee meetings. • Participate in resident and family councils. • Direct your concerns to a person capable of addressing them such as the charge nurse, director of nursing, or nursing home administrator. For example, you notice that family council meetings are held during the day, limiting the participation of working family members. Report this situation to the nursing home administrator and offer alternative meeting times. • Participate in care plan development. Residents, their representatives, and those advocates invited by the resident should be active members of the healthcare team, and it is your right to participate in care planning. If you or your advocate has not been invited, ask your charge nurse.

2.4

End-Stage Renal Disease

More than 661,000 Americans have kidney failure. Of these, 468,000 individuals are on dialysis, and roughly 193,000 live with a functioning kidney transplant (National Institute of Diabetes and Digestive and Kidney Disease 2019). End-stage renal disease (ESRD) generally requires renal replacement therapy accomplished through hemodialysis, peritoneal dialysis, and preemptive kidney transplant. A vast majority of patients receive hemodialysis to filter wastes and water from the blood to help control blood pressure and balance important minerals, such as potassium, sodium, and calcium. Patients are dependent on receiving treatments either in the center or at home usually three times per week: Monday, Wednesday, and Friday, or Tuesday, Thursday, and Saturday. Each dialysis session lasts about 4 h. Some people receive dialysis more frequently or at home. When choosing a dialysis schedule, patients must consider their work and child care or other caregiving duties. Generally, patients with ESRD have other chronic conditions and must interact with the health system from across the continuum of care. Given the amount of time the patients with ESRD spend interacting with the healthcare system, coupled with the need for coordinated care, patient and family engagement is critical. Many dialysis centers have patient advisory councils that help provide feedback and there are a number of government-supported efforts that support the integration of the patient’s voice. The following information is made available to dialysis patients through an ESRD National Resource Center supported by CMS (End Stage

2.4 End-Stage Renal Disease

25

Renal Disease National Coordinating Center n.d.): Clinicians can use these tips to be prepared to interact with patients and families and to bring awareness to these activities for better engagement. 1. Know Your Care Plan—It’s your road map to better health. Your care plan is created every year by you, your doctor, and the dialysis staff. It contains medical, nutritional, and social goals specific to you. Request a copy of your care plan and save it with your medical records. 2. Ask Questions—Find out what your medications do for you, how well dialysis is cleaning your blood, why certain foods are bad for you, and what foods are best. 3. Know Your Dialysis Options—Did you know there are different ways to dialyze? Some options even allow you to dialyze at home. Some may suit your needs better than others, like helping you work or go to school. Ask and find out. 4. Know Yourself—You know your body better than anyone else. If you don’t feel well after taking some medications, tell the doctor and the staff exactly how you feel. They need your feedback to make your care plan work for you. 5. Notice Trends—Is your blood pressure high lately? Are you cramping more? Having trouble sleeping at night? These things could indicate that your care plan should be adjusted. Tell the staff about them. 6. Educate Yourself—Don’t be shy or afraid to ask your care team to explain medical terms in words you can understand. Ask where you can get more information about medical issues that might affect you. They are important! 7. Speak Up—You are the star of your care plan meeting. Don’t be shy. Be heard! The more you take part in the meeting, the more you will benefit. 8. Your Appointment Is Important—This meeting is focused entirely on your health and how to improve it. Your medical team is there to help you, so if you are unable to keep your appointment let them know in advance and reschedule as soon as possible. 9. Decide Together—Make sure that you understand what each part of the care plan means and how it will affect your health. You will be asked to approve the decisions the doctor and staff make, so you need to understand every part. 10. You Don’t Have to Go Alone—It’s okay to bring a loved one, a family member, or a good friend to help you ask questions and understand the answers. Under special circumstances, they could go in your place, but of course it’s best for you to be there and actively participate. Patients who undergo dialysis treatment have an increased risk of getting an infection. Hemodialysis patients are at high risk for infection because the process of hemodialysis requires frequent use of catheters or insertion of needles to access the bloodstream. Hemodialysis patients have weakened immune systems, which increase their risk for infection, and they require frequent hospitalizations and surgery where they might acquire an infection. Bloodstream infections are a dangerous complication of dialysis (Centers for Disease Control and Prevention 2017).

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About 75,000 people receive hemodialysis through a central line. Central lines have a higher risk of infection than a fistula or graft. The CDC estimated that 37,000 central line-associated bloodstream infections may have occurred in US hemodialysis patients in 2008 leading to a call to action. It is important for physicians, nurses, dialysis technicians, and all healthcare workers to understand and follow proper infection control procedures. Recognizing the importance of engaging patients in the process of preventing infections, the CDC supported a “Making Dialysis Safer for Patients” coalition which is a partnership of organizations and individuals that have joined forces with the common goal of promoting the use of CDC’s core interventions and resources to prevent dialysis bloodstream infections. Coalition partner organizations fall into multiple categories: (1) professional organizations representing physicians, nurses, and/or technicians involved in dialysis care, or representing public health professionals, infection preventionists, or healthcare epidemiologists; (2) dialysis patient organizations; (3) dialysis and other healthcare delivery organizations; (4) federal agencies; (5) certification or accrediting organizations; (6) ESRD Networks; (7) health departments; and (8) quality improvement organizations. One of the tools that came out of this collaborative was the “Conversation Starter to Prevent Infections in Dialysis Patients.” This tool helps dialysis patients and family members to begin to discuss infection prevention with dialysis. For example, one of the suggested conversation starters follows: Patient Question: How does this facility involve patients and their families in infection control activities? Are patients encouraged to speak up when they see a concerning practice for example a staff member who does not wash her hands? Patient Explanation: Dialysis centers should educate and empower patients to help prevent infections and support a safe care environment. Talk to your social worker or facility administrator for ideas on how you can get involved (AHRQ Safety Program for End-Stage Renal Disease Facilities—Toolkit 2015).

2.5

Summary

Every patient is unique and deserves the opportunity to be listened to and engaged in their care. Certain situations, settings of care, and conditions provide even more challenges for patients and may require different approaches to ensuring that their voice is heard. This engagement may, in fact, help to achieve better outcomes in a particular setting.

References AHRQ Safety Program for End-Stage Renal Disease Facilities—Toolkit. Rockville, MD: Agency for Healthcare Research and Quality; 2015. https://www.ahrq.gov/professionals/quality-patientsafety/patient-safety-resources/resources/esrd/index.html.

References

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Centers for Disease Control and Prevention. Dialysis safety. 2017. https://www.cdc.gov/dialysis/ index.html. Accessed 13 June 2019. Centers for Medicare & Medicaid Services. Resident and family engagement in nursing home quality. n.d.. https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/QAPI/ Downloads/QAPI-Consumer-Factsheet.pdf. Accessed 12 June 2019. End Stage Renal Disease National Coordinating Center. Patient engagement. n.d.. https://www. esrdncc.org/en/. Accessed 13 June 2019. National Institute of Diabetes and Digestive and Kidney Disease. Kidney disease statistics for the United States. 2019. https://www.niddk.nih.gov/health-information/health-statistics/kidneydisease. Accessed 13 June 2019. U.S. Department of Health and Human Services. Multiple chronic conditions: a framework for education and training. Washington, DC. 2015. https://www.hhs.gov/ash/about-ash/multiplechronic-conditions/education-and-training/curriculum/module-1-person-and-family-centeredcare/index.html. Accessed 12 June 2019.

3

Pursuing Continuous Quality Improvement

3.1

The Evolution of Quality Improvement

While frequently referenced as a new activity, the science of quality improvement has been evolving for centuries. Florence Nightingale highlighted the importance of quality measurement as she traveled with 38 other nurses to a military camp during the Crimean War. When she arrived, she noted the deplorable conditions in which treatment was being provided (Cook 1913). She began to combine her passion for helping with scientific evidence to measure the quality of care through monitoring the rate of mortality. She noted that the mortality rate was nearly 60%. She worked to decrease the rate by employing sanitation and nutrition intervention and measuring their success to achieve a decrease in the rate to 42% and then to 2.2%. Dr. Ernest Codman, MD, was a surgeon in Boston that brought improved outcomes of care by measuring the outcomes of patients over time. He is well known for his work in 1911 in which he followed the outcomes of patients that were discharged believing that every hospital and every surgeon should follow every patient long enough to determine whether the treatment was successful and to inquire, “If not, why not” (Codman (Ernest Amory) (1869–1940) 2009). During the same period, Dr. Codman was asked to form and chair the Committee on Standardization of Hospitals for the American College of Surgeons. That committee later evolved into the Joint Commission on Accreditation of Healthcare Organizations, now known as The Joint Commission. In 2000 and 2001 the Institute of Medicine (IOM) released two landmark publications. The first “To Err is Human” and the second “Crossing the Quality Chasm” continue to guide quality measurement and improvement even today (see Appendices B and C for executive summaries of these landmark reports). The IOM defined quality as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge”(Institute of Medicine 1990). In the first report, To Err Is Human: Building a Safer Health System, the IOM concluded that tens of thousands of

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Americans die each year from errors in their care, and hundreds of thousands suffer or barely escape from nonfatal injuries that a truly high-quality care system would largely prevent. The report establishes a quality measurement goal of a 50% reduction (at a minimum) in errors over 5 years (Institute of Medicine 2000). Crossing the Quality Chasm magnified the need for urgent change to close the gap between the current state of health care and the desired state. The report highlighted the fact that Americans were not receiving care that meets their needs and based on the best scientific knowledge (Institute of Medicine 2001). The publication outlined an organizing framework to better align the incentives inherent in payment and accountability with improvements in quality emphasizing the need for evidence-based practice, quality measurement, and better clinical information systems. One of the recommendations called for Congress to authorize and appropriate funds for the Department of Health and Human Services to establish monitoring and tracking processes for use in evaluating the progress of the health system to achieve the aims of safety, effectiveness, patient-centeredness, timeliness, efficiency, and equity. These landmark publications served as a call to action as consumers, clinicians, and policymakers knew that we could do much more to ensure the quality of care provided to patients that enter into the healthcare system. Several organized efforts started or had a change in their approach to quality improvement to decrease the potential for harm.

3.2

Evolving Methodology of Quality Improvement

More than three decades ago, many approached quality improvement efforts as a method of a retrospective inspection of the care that was provided to see if mistakes were made during the process. This would often involve randomly selecting many medical records for review by personnel trained in looking for certain abnormalities documented in the medical record. Nurses or medical record professionals frequently performed this task. If a potential problem was found, the case would normally be referred to a physician for further review. If the physician agreed that an issue existed, he/she would document the problem and often have a discussion with the physician for which the problem had been identified. The problem would be entered into one of the multiple data collection systems and tracked to determine if patterns of problems could be identified. This method of continuous improvement as a single approach was fraught with problems in that it often equated to looking for a needle in a haystack. Personnel would review several cases in which there was no problem, searching for the mistake. Once the mistake was found, another physician would be placed in the position of making a judgment about the care based on his teaching. The physician providing the care was frequently not receptive to the feedback. The review often centered around the care provided by the physician, ignoring the contributions or missteps of nurses, therapists, or other members of the care team. The review was often only a snapshot of the care documented in the medical record for a hospital event without

3.3  Quality and Safety in the Airline and Automobile Industry

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a connection to care that may have been provided before or after the hospital episode. The review was also fairly time consuming and resource intensive. Many influences can be credited to the field of quality improvement progressing from the retrospective approach to improvement to a more data-driven approach. One influence was the move toward process improvement in the automobile industry. Based on the corporate philosophy of “customer first” and “quality first” Toyota Motor Co., Ltd. won the Deming Application Prize in 1965 and the Japan Quality Control Award in 1970, following the introduction of total quality management (TQM) emphasizing the principles of putting the customer first, improvement, and total participation. Toyota emphasized the need to build in quality from the beginning rather than problems and recalls once a product has been placed on the market. They empowered their employees to stop the production line if they found a problem so that it could be corrected right away rather than waiting to fix it later. They trusted that the employees on the front line possessed the expertise to know when the process was not working as it should. They also developed a number of tools to use a data-driven approach to look for the root causes of a problem and solutions so that it could be prevented in the future rather than allowing the same issue to continue for repeated instances. As a result, higher product quality at all levels and ranks of the organization became the norm because of the basic concepts of TQM with problem-solving and continuous improvement (referred to as kaizen).

3.3

 uality and Safety in the Airline and Automobile Q Industry

There were several catastrophic airline incidences in the 1920s that led the airline industry to the realization that it could not solely depend on retrospective reviews of plane crashes alone as a method to improve airline safety. Several safeguards were put in place over the course of the years including the introduction of government regulations. One key change came about in 1934 when a Boeing Model 299 aircraft began to take off and suddenly stalled and was unable to gain altitude. The plane began to fall to the ground and burst into flames upon impact. The investigation found “pilot error” as the cause. The pilot had neglected to release the elevator lock before takeoff. Once airborne, he realized what was happening and tried to reach the lock handle, but it was too late. Although the US Army had ordered several of the Model 299, corrections had to be made or the plane would not survive. The media noted that the plane was “too much plane for one man to fly.” Realizing that the viability of the aircraft was at stake, the pilots sat down to determine what could be done to save the aircraft and the company. They determined that they had to develop a process to make sure that everything was done prior to and during takeoff so that errors of the memory could be avoided. As a result, the first pilot checklists were developed in 1937. The first set of checklists consisted of four checklists centered on takeoff, flight, before landing, and after landing. These checklists for the pilot and copilot made sure that nothing was forgotten. With the checklists, careful

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planning, and rigorous training, the 12 aircraft managed to fly 1.8 million miles without a serious accident. The US Army accepted the Model 299 and eventually ordered 12,731 of the aircraft they numbered the B-17 (Schamel 2017). The industry also observed that in addition to checklists, a change in culture was necessary so that decisions were not left to one person but that a team-based approach to cockpit management would be more effective. This type of management began with the US Department of Transportation, National Transportation Safety Board (NTSB), that formalizes an approach known as Crew Resource Management (CRM). The recommendations resulted from an investigation of the 1978 crash of United Airlines Flight 173. This incident involved a DC-8 crew running out of fuel over Portland, Oregon, while troubleshooting a landing gear problem. The investigation revealed that while the copilot gave warning of this problem, the pilot failed to listen. CRM refers to the effective use of all available resources: human resources, hardware, and information. CRM emphasizes the value of the entire team that routinely work with the cockpit crew, who are involved in decisions required to operate a flight safely including the aircraft dispatchers, flight attendants, maintenance personnel, and air traffic controllers (U.S.  Department of Transportation 2004).

3.3.1 Industry Influences on Healthcare Quality The healthcare industry has learned from both the CRM and checklist practices of the aviation industry, which emphasizes that complex systems require more than a reliance on human memory and behaviors. The system must be designed to support success. Many of the errors that occur in health care are not merely individual mistakes but a result of systemic failure of some sort that does not adequately guard against errors because of its design. Implementing a culture of continuous improvement as promoted by Toyota and the airline industry means that the healthcare system will continuously look for ways to improve the system using a data-driven approach to determine trends over time, predict future mishaps, promote an environment of communication and teamwork, and have a desire to reduce harm and improve safety. A culture of improvement reinforces that the thought that delivering the best care is the goal of everyone on the team. Checklists can also play a part in improving health care by standardizing the steps that should be followed in a process for patient care. The checklist serves as a reminder for all members of the healthcare team so that all patients received the same kinds of care. One such checklist was developed by the World Health Organization (WHO) and focuses on safe surgery. The “Surgical Safety Checklist” aims to decrease errors and adverse events and increase teamwork and communication in surgery. Safe Surgery Saves Lives guidelines provide a 19-item checklist which focuses on a sign in (before induction of anesthesia), timeout (immediately before skin incision), and sign-out (when the patient is ready to leave the operating room) (World Health

3.4  Quality Improvement Organizations (QIOs)

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Organization 2009). Checklists have already proven to be a powerful intervention in improving patient safety. The checklist implementation resulted in significant reductions in mortality and inpatient complications. Checklists and team-based care were also used extensively by Peter Pronovost, a professor at Johns Hopkins University School of Medicine’s Departments of Anesthesiology and Critical Care Medicine and Surgery. He sought to simplify complex procedures and make them less error-prone. One of the first checklists developed was for the prevention of catheter-associated central line infections. There was a recognition that between 30,000 and 62,000 occurred a year in the USA.  The Centers for Disease Control and Prevention had also developed guidelines to decrease infections including hand washing, using full-barrier precautions during the insertion of central venous catheters, cleaning the skin with chlorhexidine, avoiding the femoral site if possible, and removing unnecessary catheters. Pronovost listed the steps necessary to prevent line infections and introduced the checklist at Johns Hopkins, in Baltimore, MD, USA, and asked medical staff to run through it each time they inserted a line. The results were dramatic: the infection rate went from 11% to zero.

3.4

Quality Improvement Organizations (QIOs)

The QIO Program, one of the largest federal programs dedicated to improving health quality for Medicare beneficiaries, is an integral part of the U.S. Department of Health and Human (HHS) Services’ National Quality Strategy for providing better care and better health at a lower cost. By law, the mission of the QIO Program is to improve the effectiveness, efficiency, economy, and quality of services delivered to Medicare beneficiaries (Centers for Medicare and Medicaid Services 2019). Based on this statutory charge, and CMS’s program experience, CMS identifies the core functions of the QIO Program as: • Improving quality of care for beneficiaries • Protecting the integrity of the Medicare Trust Fund by ensuring that Medicare pays only for services and goods that are reasonable and necessary and that are provided in the most appropriate setting • Protecting beneficiaries by expeditiously addressing individual complaints, such as beneficiary complaints; provider-based notice appeals; violations of the Emergency Medical Treatment and Labor Act (EMTALA); and other related responsibilities as articulated in QIO-related law A few years ago, CMS redesigned its QIO Program to enhance the quality of services for Medicare beneficiaries further. The new program structure maximizes learning and collaboration in improving care, enhances flexibility, supports the spread of effective new practices and models of care, helps achieve the CMS priority of ensuring quality and safety, and delivers program value to beneficiaries, patients, and taxpayers.

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The QIO Program changes include separating quality of care complaint investigations or case review from quality improvement. Now, one group of QIOs, Beneficiary and Family Centered Care (BFCC) QIOs, addresses quality of care concerns and appeals, while another group Quality Innovation Networks (QINs) QIOs works with providers, stakeholder, and Medicare beneficiaries to improve the quality of health care for targeted health conditions. QIOs have skills for transforming practices, employing lean methodologies, assisting Medicare providers with their transition to the Quality Payment Program, and developing innovative approaches to quality improvement.

3.5

 uality Improvement Methodology and Learning Q and Action Networks

Many have contributed to the evolution of the current-day quality improvement methodologies utilized around the world. Contributions by such people as Avedis Donabedian have provided an organizing structure to address quality improvement within health care. In his view, to affect outcomes, we must affect structures and processes. Structures describe the settings where care is delivered; processes are the actual medical care practices that are provided to the patient, and outcomes reflect the effect of structures and processes. During the transformation and quality improvement journey, the aim is to achieve outcomes by changing structures and processes. W. Edwards Deming further contributed to quality improvement by outlining his theory of profound knowledge, which has four major components: 1. System thinking—All care is delivered through a system that can be divided into sub-processes. 2. Psychology of change—Leaders of practice transformation and quality improvement should create a shared vision of the future state of the enterprise. Leaders should work to ensure that all staff members support this vision. From there, all team members can contribute their energy and creative ideas to reach a common goal. 3. Theory of knowledge—The system of care and everything connected to it should be studied by those interested in changing it. Theories of changing components, or processes, should be tested by PDSA (Plan, Do, Study, Act) cycles to allow for the system to evolve. Results of those changes should be examined regularly. 4. Variation—All systems are developed to create outcomes. These outcomes have a natural variation. Organizations that understand data variation will not overreact to natural movement of data on a weekly or monthly basis. The Agency for Healthcare Research and Quality (AHRQ) has placed significant focus on the culture of an organization to achieve quality outcomes and reduce harm. They have developed several tools to assist organizations in this effort as described later in the text.

3.6  Coordinating Care and Improving Quality Through Apps, Monitors, and Digital…

35

The foundational work established by Donabedian and Deming can be applied when healthcare practices use a model to assist in change such as the Institute for Healthcare Improvement (IHI) Model for Improvement, Lean, and Six Sigma. One component of the IHI Model is the PDSA Cycles—PDSA stands for Plan, Do, Study, Act. PDSA cycles are very small cycles of change that allow for care to continue to be delivered while clinicians attempt small changes to processes. By design, these cycles should be small (even just one clinician testing the change), so that they are successful at first and allow the team to see that change is possible. Each success allows positive motivation to grow, which will lead to a greater appetite for even larger changes. Many quality improvement activities are accomplished through Learning and Action Networks. A Learning and Action Network (LAN) is an improvement initiative that brings together healthcare professionals, patients, and other stakeholders around an evidence-based agenda to achieve rapid, wide-scale improvement. The LAN model includes collaborative projects, online interactions, and peer-to-peer education to facilitate shared commitment, energy, and knowledge that allows participants to learn from each other. A LAN is data driven and helps to achieve large-­scale improvement by sharing data, best practices, and lessons learned with a community, including both healthcare providers and patients for the purpose of working together to plan interventions for change, implementing the actions, studying the change to see if it works, and adjusting if it doesn’t work.

3.6

 oordinating Care and Improving Quality Through C Apps, Monitors, and Digital Devices

Increasingly health care is coordinated through innovative technology which brings health information closer to patients and clinicians at home, traveling or at the point of care. Consumers are becoming accustomed to finding information of any sort on their smartphones, watches, or personal devices. Data to improve care is frequently captured and provided to clinicians when the patient comes in for a visit or transmitted directly to the clinician. Wearable devices are currently used to track prenatal care such as in monitoring fetal heart rates, blood pressure control, and glucose control for diabetes. Wearable devices also track physical activities, heart rates, sleeping patterns, and other forms of valuable information. Smartphones are used in the Text4baby program. This is one of the largest and free mobile information services designed to promote maternal and child health through text messaging (Text4baby n.d.). The service uses SMS technology, taking advantage of the fact that 99% of text messages are read and 90% within 3 min. The Centers for Medicare & Medicaid Services (CMS) and Text4baby have partnered to make it easier for moms to take charge of their family’s health. Through the program, mothers obtain information about health care, where to obtain free or low-­ cost health coverage, and safety information (Connecting Kids to Coverage and Text4Baby Factsheet n.d.).

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The use of technology to generate, collect, and promote health, health care, and quality improvement continues to evolve. There is still work to do to incorporate patient-generated data into useful information to inform healthcare outcomes. Many tools are available to engage patients in their health care through mobile technology and telemedicine. There is promise that the use of patient-generated data can improve quality and cost of health care. Studies are currently underway, which point to the fact that patients who are digitally engaged may demonstrate a significant reduction in costs, hospital admissions, and complications.

3.7

Summary

Quality improvement has evolved over the years to expand from randomly searching for problems to a more data-driven and action-oriented approach. Setting aims, planning interventions, testing the interventions, and adjusting when necessary have become a standard component of many quality improvement methodologies. Improving the quality of care involves joint efforts by clinicians, patients, families, and community at large.

References Centers for Medicare & Medicaid Services. Quality improvement organizations. 2019. https:// www.cms.gov/medicare/quality-initiatives-patient-assessment-instruments/qualityimprovementorgs/index.html. Accessed 5 May 2019. Codman EA (Ernest Amory) (1869–1940). In: Trove. 2009. https://nla.gov.au/nla.party-82163. Accessed 20 Jan 2019. Connecting Kids to Coverage and Text4Baby Factsheet. n.d.. https://partners.text4baby.org/ index.php/get-involved-pg/partners/local-organizations-and-advocates/54-get-involved/partners/188. Accessed 2 Mar 2019. Cook ES. The life of Florence Nightingale. London: MacMillan; 1913. Institute of Medicine. Medicare: a strategy for quality assurance, vol. I.  Washington, DC: The National Academies Press; 1990. https://doi.org/10.17226/1547. Institute of Medicine. To err is human: building a safer healthcare system. Washington, DC: The National Academies Press; 2000. Institute of Medicine. Crossing the quality chasm: a new health system for the 21st-century Committee on Quality of Health Care in America. Washington, DC: N.A. Press; 2001. Schamel J. How the pilot’s checklist came about. First written Oct. 30, 1935. Updated March 18, 2017. http://www.atchistory.org/History/checklst.htm. Accessed 5 May 2019. Text4baby. n.d.. https://www.text4baby.org/. Accessed 2 Mar 2019. U.S. Department of Transportation. Advisory circular: crew resource management training. 2004. https://www.faa.gov/documentLibrary/media/Advisory_Circular/AC_120-51E.pdf. Accessed 5 May 2019. World Health Organization. WHO surgical safety checklist. 2009. https://www.who.int/patientsafety/safesurgery/checklist/en/. Accessed 5 May 2019.

4

A Quest for Patient Safety

4.1

Exploring Patient Safety

The World Health Organization (WHO) defines patient safety as the absence of preventable harm to a patient during the process of health care and reduction of risk of unnecessary harm associated with health care to an acceptable minimum. An acceptable minimum refers to the collective notions of given current knowledge, resources available, and the context in which care was delivered weighed against the risk of nontreatment or other treatments. WHO brings attention to the magnitude of patient safety issues noting that throughout the globe as many as 1 in 4 patients are harmed while receiving primary and ambulatory health care; 134 million adverse events occur each year in hospitals in low- and middle-income countries, contributing to 2.6 million deaths annually due to unsafe care, and $42 billion medication errors cost an estimated 42 billion USD annually (World Health Organization 2009). They note that every point in the process of caregiving contains a certain degree of inherent unsafety. They suggest that clear policies, organizational leadership capacity, data to drive safety improvements, skilled healthcare professionals, and effective involvement of patients in their care are all needed to ensure sustainable and significant improvements in the safety of health care. Table  4.1 highlights various types of harms associated with health care (World Health Organization (WHO) 2009). The WHO notes that patient safety is an issue in all countries that deliver health services, whether these services are privately commissioned or funded by the government. “Adverse events” include missed and delayed diagnoses, mistakes during treatment, medication mistakes, delayed reporting of results, miscommunications during transfers and transitions in care, inadequate postoperative care, mistaken identity, and others. In developing countries, the poor state of infrastructure and equipment, unreliable supply and quality of drugs, shortcomings in infection control and waste management, poor performance of personnel, low motivation or

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Table 4.1  World Health Organization (WHO): Patient Safety 2010 World Health Organization and Patient Safety Patient Safety: The reduction of risk of unnecessary harm associated with health care to an acceptable minimum (WHO-ICPS, 2009). Health care is one of the most unsafe industries. Studies show that about 10% of hospital patients suffer from an adverse event (AE), and the incidence of AE in developing countries is higher than 10% Healthcare-associated • Hundreds of millions of patients are affected by HCAI infection (HCAI) worldwide each year, leading to significant mortality and financial losses for health systems and patients • Of every 100 hospitalized patients at any given time, 7 in developed and 10 in developing countries will acquire at least one • 5–15% of hospitalized patients acquire HCAI—about 40% in ICUs—and mortality from HCAI is 12–80% • Five million HCAI estimated to occur in hospitals in Europe/ year Medication error Leading cause of injury in developed/developing countries • 1.5 million harmed and thousands killed in the USA/year • In some countries, 70% of patients’ medication histories contain errors Unsafe surgery • 234 million surgical procedures/year worldwide (more than childbirths) • Seven million complications, one million deaths worldwide each year Clinical handovers Communication between units/healthcare team/hospital facilities/community • 15% Handovers result in adverse events Injection safety • Over 70% of injections in primary health care are unnecessary • Unsafe injections account for 33% of new HBV infections, 42% of HCV, and 2% of all new HIV infections worldwide

insufficient skills, and severe under-financing of the health s­ ervices make the probability of adverse events much higher. Many of the features of patient safety programs do not require financial resources, but rather the commitment of individuals to practice safely.

Voices from Patients, Families, Caregivers, and Clinicians: Lewis’ Story

One of the most effective catalysts to improvements in patient safety was sparked by patients and families beginning to share their stories of harm which put a face to the statistics. One such story was that of Lewis Blackman, a healthy, gifted 15-year-old, who underwent elective surgery at the Medical University of South Carolina (MUSC). Lewis bled to death over 30 h while those caring for him missed signs that he was in grave peril. Lewis was on track to enroll in Duke University as he excelled in math, science, history, and English. As a seventh grader, he made the highest score in Richland County on a highly competitive Duke standardized test, the TIP test. Lewis was born with a condition called pectus excavatum. Pectus excavatum is a structural

4.2 Safety Across the Board

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deformity of the anterior thoracic wall in which the sternum and rib cage are shaped abnormally. Pectus excavatum can sometimes impair cardiac and respiratory function and cause pain in the chest and back, although more often, as in Lewis’ case, it is primarily a cosmetic condition. After much discussion and research, the family decided to undergo corrective surgery at MUSC. Postoperatively, Lewis began to experience symptoms of acute abdomen; however, the signs and symptoms were not immediately recognized by the nurses and junior residents that provided most of his care during the weekend recovery period. The requests by his mother to have a senior physician come to see Lewis went unanswered. Lewis continued to deteriorate after repeated misdiagnosis of his postoperative complications as ileus. He continued into a crisis state and ultimately succumbed. The autopsy revealed that Lewis bled to death internally because of a perforated ulcer, a known side effect of one of the medications that he was given for pain. Experts noted that while impossible to know what would have happened had the condition been recognized, it is likely he could have been saved with timely intervention.

Lewis’ mother Helen Haskell went on to start the nonprofit patient safety organization, Mothers Against Medical Error. She is also the president of Consumers Advancing Patient Safety. Since Lewis’ medical error death in 2000, Helen has worked to improve healthcare safety and quality in a wide range of areas, including medical education, patient-activated rapid response, infection prevention, medical error disclosure, and patient empowerment, among others. In her home state of South Carolina, she was the primary architect of the Lewis Blackman Patient Safety Act, which required, for the first time, that healthcare providers be clearly identified and that be provided with an emergency response system in hospitals. This law was passed in 2005, 5 years after Lewis’ death.

4.2

Safety Across the Board

Several years ago, quite a few other studies were conducted that revealed that patients suffered from potentially avoidable harm when they entered into the healthcare system. One such study was conducted by the U.S. Department of Health and Human Services (HHS), Office of the Inspector General (OIG), and was entitled “Adverse Events in Hospitals: National Incidence Among Medicare Beneficiaries.” The purpose of the study was to estimate the national incidence of adverse events for hospitalized Medicare beneficiaries, assess the preventability of such events, and estimate associated costs to Medicare (Department of Health and Human Services, Office of Inspector General 2010). The study consisted of a review of medical records by physician reviewers using various tools to identify hospital-acquired conditions. The report estimated that 13.5% of hospitalized Medicare beneficiaries experienced adverse events during

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their hospital stays. Of the nearly one million Medicare beneficiaries discharged from hospitals in October 2008, about 1 in 7 experienced an adverse event according to the study criteria. An estimated 1.5% of Medicare beneficiaries experienced an event that contributed to their deaths, which projects to 15,000 patients in a single month. Physician reviewers determined that 44% of adverse and temporary harm events were clearly or likely preventable. Physicians determined that 44% of all events were preventable, and 51% were not preventable. (For the remaining 5% of events, physicians were unable to make determinations.) Hospital care associated with adverse and temporary harm events cost Medicare an estimated $324 million in October 2008. The added costs equate to an estimated 3.5% of Medicare’s expenditure for inpatient care during the same period. To give these figures an annual context equates to 3.5% of the $137 billion Medicare inpatient expenditure at the time. Additionally, these Medicare cost estimates do not include additional costs required for follow-up care after the sample hospitalizations. Similar studies were conducted in Ireland (Rafter et al. 2017) with hospitals and in Sweden with hospitals (Nilsson et  al. 2016) and home health agencies (Schildmeijer et al. 2018) which had similar results. A later study conducted by HHS OIG was designed to estimate the national incidence rate, preventability, and cost of adverse events in Skilled Nursing Facilities (SNFs) by using a two-stage medical record review to identify events for a sample of 653 Medicare beneficiaries discharged from hospitals to SNFs for post-acute care. Sample beneficiaries had SNF stays of 35 days or less. The study revealed that an estimated 22% of Medicare beneficiaries experienced adverse events during their SNF stays. An additional 11% of Medicare beneficiaries experienced temporary harm events during their SNF stays. Physician reviewers determined that 59% of these adverse events and temporary harm events were clearly or likely preventable. They attributed much of the preventable harm to substandard treatment, inadequate resident monitoring, and failure or delay of necessary care. Over half of the residents who experienced harm returned to a hospital for treatment, with an estimated cost to Medicare of $208 million in August 2011. This equates to $2.8 billion spent on hospital treatment for harm caused in SNFs in FY 2011 (Department of Health and Human Services. Office of Inspector General 2014). Voices from Patients, Families, Caregivers, and Clinicians: Alicia’s Story

Another such pioneer in the patient safety movement is Alicia Cole1 who had been a successful working actress whose only experience with health care was playing doctors on TV. All that changed, however, when she learned in 2006 that she needed a “routine” procedure to remove two small uterine fibroids. Originally, she was scheduled to be home in 2 days, but that never took place. She left the operating room with a fever, nausea, and pain, and her condition declined from there.

1  Alicia Cole as posted on the Patient Safety Share Your Story Website: https://patientsafetymovement.org/advocacy/patients-and-families/patient-stories/alicia-cole/ (Retrieved 5 Mar 2019).

4.2 Safety Across the Board

Alicia reports that 5 days later, during the evening dressing check, her mother noticed a small black dot near the incision. In just over an hour, the dot morphed into a quarter-sized pustule. Right then and there, the doctor and Alicia’s mother performed a bedside surgical procedure, cutting open her abdomen and draining the toxic fluid. A terrified Alicia would eventually be diagnosed with multiple hospital-acquired infections including necrotizing fasciitis. Alicia tells about her encounter with her near-fatal case of flesh-eating disease that turned her entire midsection into something out of a horror movie and her 2-day hospital stay that turned into 1 month in ICU, 2 months in the hospital, six additional surgeries, near amputation of her leg, a year and 2 months of twice-a-day home health care for dressing changes, 5 months of daily hyperbaric oxygen chamber treatments, and 3  years of treatment at a wound care center for an open, draining abdomen. Six years later, she was still in physical therapy and undergoing pelvic floor rehabilitation. Her weekly aftercare, therapies, and doctor appointments would last for over a decade. Alicia notes that the hospital was later cited for violation of five state rules and ten federal rules for patient safety, infection control, and unsanitary conditions in their operating rooms. An ICU nurse later shared that Alicia was his third patient with NF disease and the only one to survive. With a talk-to-type program from her bed, Alicia began to share her experience via emails, blogs, and social media to educate others. In 2008, she and her parents founded the Alliance for Safety Awareness for Patients (ASAP) as an education and awareness organization. Alicia became co-sponsor of California Senate Bills 158 and 1058 (Nile’s Law) measures which help ensure that hospitals maintain a sanitary environment and mandates public reporting of hospital-acquired infection rates; it also established training programs for hospital infection control professionals. The bill was signed into law in September 2008. She was also appointed to the state Healthcare Associated Infection (HAI) Advisory Committee and has worked tirelessly on the Education and Public Reporting Subcommittee. She also became a member of the State of Wyoming HAI Advisory Group and Chair of the Engagement Committee. In between doctor appointments, Alicia went back to school at UCLA to receive a Post-­ Graduate Certificate in Healthcare Management and Leadership. She would later consult on the development of the Patient Advocacy Certificate program. She has worked with the Consumers Union Safe Patient Project, lobbied on Capitol Hill, and presented at the CMS Quality Conference, and was among the inaugural class of patient advocates invited to contribute at the IHI National Quality Forum. In recognition of these and many other efforts, President Barack Obama honored Alicia during a national address at the White House. She was later appointed as a voting member to the Presidential Advisory Council for Combatting Antibiotic Resistant Bacteria (PACCARB) and continues to serve on that Council under President Trump. Alicia is a true champion for patient safety and patient and family engagement.

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4.3

4  A Quest for Patient Safety

Actions to Address Patient Safety

In addition to the noteworthy actions above, there are many activities throughout the world to advance efforts in patient safety. One effort that has demonstrated results is the “Partnership for Patients.”

4.3.1 Partnership for Patients The Partnership for Patients (PfP) campaign was launched in April 2011 by the U.S. Department of Health and Human Services (HHS) with the ambitious goals of reducing preventable hospital-acquired conditions (HACs) by 40% and 30-day hospital readmissions by 20%. The Partnership for Patients initiative is a public-private partnership, led by the Centers for Medicare & Medicaid Services (CMS) working to improve the quality, safety, and affordability of health care for all Americans. The most recent Partnership for Patients goals aim to engage 100% of the nation’s acute care medical centers participating in making hospital care safer, more reliable, and less costly through the achievement of two goals: 1. Making Care Safer. Keep patients from getting injured or sicker. Decrease all-­ cause patient harm (to 97 hospital-acquired conditions [HACs]/1000 discharges) by 20% compared to the 2014 interim baseline (of 121 HACs/1000 patient discharges). 2. Improving Care Transitions. Help patients heal without complications. Decrease preventable complications during a transition from one care setting to another so that all 30-day hospital readmissions would be reduced by 12% as a population-based measure (readmissions per 1000 people). At the start of the project, the Agency for Healthcare Research and Quality (AHRQ) reported that 14.5 patient harms were occurring per 100 discharges. To reduce harm at the desired level of magnitude, the campaign originally selected nine focus areas of harm, as well as readmissions, for which there was evidence that improvement was possible, with a tenth focus area, obstetrical early elective delivery (OB-EED), being added in early 2012 (HSAG, Health Services Advisory Group, and Mathematica Policy Research 2015; Centers for Medicare & Medicaid Services, Partnership for Patients 2016). Other public and private stakeholders focused on financial incentives and improvement work for some of these areas, but the high level of harm that persisted more than a decade after the landmark 1999 Institute of Medicine (IOM) report, “To Err is Human,” suggested that the pace of harm reduction had been slow despite knowledge of the problem. PfP set bold aims, and then implemented a strategy to align these other healthcare stakeholders, including federal and other public and private healthcare payers, providers, and patients, to build partnerships that focused on reducing harm and accelerating improvement. With relevant stakeholders moving in the same direction at the same time, the campaign strove to overcome the

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inherently limited reach of any single initiative operating in the complex healthcare environment. Central to the campaign was the investment of considerable CMS resources to create a learning community, which sought to spread best practices by engaging hospital executives and staff, supporting changes in process of care, building the capacity of hospitals to improve patient safety, and engaging patients and families. The community (and campaign) was national in scale, and CMS strove to have an impact on all hospitals in the USA. From the population of all hospitals, 72% of general acute care hospitals in the USA, representing over 80% of admissions, worked with one aspect of the campaign, Hospital Engagement Networks (HENs), during 2012–2014. HENs were tasked with recruiting hospitals to work with the PfP campaign, collaborating with other partners and contractors, providing feedback to their hospitals, and helping to facilitate activity within the learning communities. The campaign was managed aggressively and continuously by CMS to constantly challenge hospitals and other stakeholders to do more to achieve the goals. The HENs were renamed in 2016 as Hospital Improvement Innovation Networks (HIINs) that were charged to work at the regional, state, national, or hospital system level to sustain and accelerate national progress and momentum toward continued harm reduction in the Medicare program, help identify solutions already working, and disseminate them to other hospitals and providers. Hospital Improvement Innovation Networks: • • • • •

Develop learning collaboratives for hospitals Provide a wide array of initiatives and activities to improve patient safety Conduct intensive training programs to help hospitals make patient care safer Provide technical assistance to help hospitals achieve quality measurement goals Establish and implement a system to track and monitor hospital progress in meeting quality improvement goals • Identify high-performing hospitals and their leaders to coach and serve as national faculty to other hospitals committed to achieving the partnership goals As announced at the CMS Quality Conference in January 2019, the National Patient Safety preliminary results for 2014–2017 reveal 20,500 lives saved from potentially avoidable harm, $7.7 billion in healthcare cost savings, and 910,000 fewer harms occurring in the population included in the Partnership for Patient efforts.

4.3.2 T  he WHO International Conceptual Patient Safety (ICPS) Framework The WHO developed an International Conceptual Patient Safety (ICPS) Framework to address 48 key concepts and preferred terms to advance patient safety around the world. It aims to represent a continuous learning and improvement cycle

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4  A Quest for Patient Safety

emphasizing identification of risk, prevention, detection, reduction of risk, incident recovery, and system resilience, all of which occur throughout any point, within the conceptual framework. The ICPS framework is a convergence of international perceptions of the main issues of patient safety, to facilitate the description, comparison, measurement, monitoring, analysis, and interpretation of information to improve patient care. The WHO framework outlines the following important steps to apply patient safety thinking to all healthcare activities: • Develop relationships with patients: Every healthcare provider should relate with patients as unique human beings with their own experience of their disease. The application of knowledge and skills alone will not necessarily result in the best outcomes for patients. Safe and effective care depends on patients disclosing their experiences of their illnesses, their circumstances, their attitudes to the risks involved, and their values and preferences on how they wish to be treated. • Understand the multiple factors involved in failures: There are many factors associated with an adverse event. Consider errors from a systems perspective. Questions about the underlying factors and causes of errors should be asked: “what happened?” rather than “who was involved?”. The “whys” (why something happened when given an answer) is a method used to investigate the causes focused on the system rather than the healthcare provider involved. • Avoid blaming when an error occurs: Healthcare providers must support each other when they are involved in an adverse event. Unless they are open about errors, there will be little opportunity to learn from them. Conduct meetings or peer-review forums, such as morbidity and mortality meetings, to review such events. • Practice evidence-based care: Healthcare providers should learn how to apply evidence-based practices and be aware of the role of protocols/guidelines and how important it is to follow them. • Maintain continuity of care for patients: The healthcare system is made up of many parts that interrelate to produce a continuum of care. Understanding the journey that patients make through this system is necessary for understanding how failures arise. Important information can be missed, outdated, or incorrect, leading to inadequate care or errors. • Be aware of the importance of self-care: Healthcare providers should be responsible for their own well-being and that of their colleagues. • Act ethically every day: Healthcare providers should be aware of their legal and ethical obligations to put the interests of their patients first. Healthcare providers can improve patient safety by engaging with patients, checking procedures, learning from errors, and communicating effectively within the healthcare team. Such simple activities can help minimize costs while minimizing the harm caused to patients too. Reporting and analysis of errors can help identify the contributing factors. Understanding the factors that lead to errors is essential to develop changes that will prevent future errors.

References

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45

Summary

Patients, families, caregivers, and clinicians can all play a part in ensuring safety in the healthcare setting. Misadventures in medicine are rarely caused by a single factor but a system of failures that can be improved through a strategic approach to reducing harm. Many healthcare professionals have devoted their time and attention to this mission to ensure that they are providing the best care possible.

References Centers for Medicare & Medicaid Services, Partnership for Patients. 2016. https://partnershipforpatients.cms.gov/about-the-partnership/aboutthepartnershipforpatients.html. Accessed 27 Mar 2019. Department of Health and Human Services, Office of Inspector General. Adverse events in hospitals: national incidence among Medicare beneficiaries. November 2010 OEI-06-09-00090. 2010. Department of Health and Human Services. Office of Inspector General. Adverse events in skilled nursing facilities: national incidence among Medicare beneficiaries. February 2014 OEI06-­11-00370. 2014. HSAG, Health Services Advisory Group, and Mathematica Policy Research. Project evaluation activity in support of partnership for patients, interim evaluation report, final September 2015, Revised December 2015 Contract Number: GS-10F-0166R Task Order: HHSM-500-2014-­ 00440G. 2015. Nilsson L, Risberg MB, Montgomery A, Sjödahl R, Schildmeijer K, Rutberg H.  Preventable adverse events in surgical care in Sweden: a nationwide review of patient notes. Medicine. 2016;95(11):e3047. https://doi.org/10.1097/MD.0000000000003047. Rafter N, Hickey A, Conroy RM, et al. The Irish National Adverse Events Study (INAES): the frequency and nature of adverse events in Irish hospitals—a retrospective record review study. BMJ Qual Saf. 2017;26:111–9. Schildmeijer KGI, Unbeck M, Ekstedt M, et al. Adverse events in patients in home healthcare: a retrospective record review using trigger tool methodology. BMJ Open. 2018;8:e019267. https://doi.org/10.1136/bmjopen-2017-019267. World Health Organization. Patient safety. 2009. https://www.who.int/patientsafety/en/. Accessed 5 Mar 2019. World Health Organization (WHO). Patient safety 2010. n.d.. https://www.who.int/patientsafety/ education/curriculum/course1_handout.pdf?ua=1. Accessed 22 May 2019.

5

Consumer Information for Patients, Families, and Caregivers

5.1

Consumer Report Cards and Resources

Consumer report cards provide demographic and performance information about a clinician or healthcare facility so that the consumers can make choices about where to seek care or ask informed questions about their healthcare services. The information is usually publicly reported. While the information can be useful, consumers must be careful to understand the source of the data to determine if it is reliable. Many report cards are derived from secondary information; thus, all sources of input should be understood. There is also a continuing push to ensure that data on report cards are meaningful and presented in a user-friendly fashion that truly helps patients and families make decisions. In general, report cards are only intended to supplement and inform discussions with providers. They include information that patients and families use to develop questions they can address with the healthcare provider. Clinicians are an essential source of the information entered into the medical records, claims entry systems, clinical data registries, and other data sources. Clinicians may find that some documentation requirements are a distraction or a waste of time, but it is helpful to consider how important the information provided is for care coordination, transparency, and providing valuable data by which patients and families make decisions. As discussed below, a variety of public rating systems and report cards now exist to help consumers as they select their physician and other clinicians, hospitals, health plans, home care providers, and services across the continuum of care.

5.1.1 National Committee for Quality Assurance (NCQA) The National Committee for Quality Assurance is a private, 501(c)(3) not-for-­ profit organization dedicated to improving healthcare quality. NCQA sponsors and an interactive report card on their site that allow consumers to gather

© Springer Nature Switzerland AG 2020  J. Moody-Williams, A Journey towards Patient-Centered Healthcare Quality, https://doi.org/10.1007/978-3-030-26311-9_5

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5  Consumer Information for Patients, Families, and Caregivers

information about health plans, healthcare providers, and other healthcare organizations (National Committee for Quality Assurance n.d.). The health plan report card lists commercial, Medicare, Medicaid, and Marketplace health plans based on their combined HEDIS®, CAHPS®, and NCQA Accreditation standard scores. NCQA evaluates health plans on the quality of care patients receive, how happy patients are with their care, and health plans’ efforts to keep improving. Specifically, the patient or family member can find information about the name and type of plan the organization is such as a health maintenance organization, point-of-service, or preferred provider organization. The site also provides a star rating ranging from one star (lower performance) to five stars (higher performance) in areas including: • • • • •

Access and service Qualified providers Staying healthy Getting better Living with illness

The healthcare provider section of the report card includes information on healthcare practices throughout the USA and consists of the practice location and recognitions. One such recognition is the Primary Care Medical Home designation, which is a program that evaluates clinicians and practices that use teamwork and technology to deliver coordinated and patient-centered primary care. The site gives information on the dates for which the recognition is valid and the level of the recognition. The level indicates varying degrees of capability for coordinating care and reporting and improving quality. The other healthcare organization sections evaluate specialized organizations based on their roles in the healthcare industry. There is also information on how well an organization supports and interacts with health plans. One such category may be wellness promotion programs in the workplace. Wellness and health promotion programs in the workplace provide participants with services such as coaching and safeguarding individual health. There are different levels of certification, depending on the degree to which the program meets specified criteria and reporting requirements.

5.1.2 Healthgrades Healthgrades is a website that provides information across digital platforms to help people choose the clinician, hospital, and other care providers. Healthgrades includes information on clinical outcomes, patient safety, provider profiles, and personalized decision tools. They report that consumers use the site to compare providers, review hospital quality, make appointments with clinical providers, prepare for their healthcare appointments, and research health and wellness information (Healthgrades n.d.).

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Healthgrades also provides an opportunity for users to contribute information. It encourages users to add their voices by: • • • •

Posting health stories Taking a nine-question survey about providers Writing provider reviews about the care received Participating in “Our Health” discussion forums

5.1.3 Consumer Reports® Consumer Reports is an independent, nonprofit member organization that uses research, consumer insights, journalism, and policy knowledge to inform purchasing decisions and drive regulatory and competitive practices (Consumer Reports n.d.). Consumer Reports provides a variety of health information and reviews of healthcare products such as blood pressure monitors, glucose monitors, hearing aids, fitness trackers, and other types of devices.

5.1.4 WebMD WebMD is an online publisher of news and information pertaining to human health and well-being. The WebMD site is one of the most widely used health information sites in the world, and it includes information for a broad audience, including consumers and clinicians. Consumers can find information on medications, finding a doctor, finding a dentist, and common symptoms of various conditions. The site also contains information on medications, including how to find the lowest price drugs. Consumers can have chats on various topics through the multiple links on the site (WebMd n.d.).

5.1.5 US News and World Report US News and World Report has become known for their publication of its healthcare rankings. The Hospital Rankings Report was one of the first publications of its kind, and it reviews hospitals’ performance in adult and pediatric clinical specialties, procedures, and conditions. They note that scores are based on several factors, including survival, patient safety, nurse staffing, and more. Hospitals are ranked nationally in specialties from cancer to urology and rated in common procedures and conditions, such as heart bypass surgery and hip and knee replacement. Hospitals are also ranked regionally within states and major metro areas. The Best Hospital Honor Roll recognizes 20 hospitals with an outstanding performance across multiple areas of care (U.S. News n.d.). In addition to hospitals, US News also rates physicians, senior care, wellness, diets, and health insurance.

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5.1.6 Choosing Wisely® Choosing Wisely is an initiative of the American Board of Internal Medicine (ABIM) Foundation. The mission of Choosing Wisely is to promote conversations between clinicians and patients by helping patients choose care that is: • • • •

Supported by evidence Not duplicative of other tests or procedures already received Free from harm Truly necessary

The campaign identifies over 500 tests and procedures and encourages doctors and patients to discuss, research, and possibly get second opinions before proceeding with them. Beginning in 2012, national organizations representing medical specialists have asked their members to identify tests or procedures commonly used in their field whose necessity should be questioned and discussed. This call to action has resulted in specialty-specific lists of “Things Providers and Patients Should Question.” To help patients engage their healthcare provider in these conversations and empower them to ask questions about what tests and procedures are right for them, patient-friendly materials were created based on the specialty societies’ lists of recommendations of tests and treatments that may be unnecessary (Choosing Wisely n.d.).

5.2

International Consumer Data Tools

5.2.1 Australia The MyHospitals is a government-owned website that has been set up to ensure that the Australian community has easy access to nationally consistent and comparable performance information for public and private hospitals. They have designed the site for members of the public, clinicians (including doctors and nurses), academics and researchers, hospital and health service managers, journalists, and others. The site provides information on more than 1000 public and private hospitals against indicators such as waiting times in emergency departments or for some types of surgery, rates of bloodstream infections acquired in hospitals, length of time patients spend in the hospital after being admitted for various conditions or procedures, and other indicators (Australian Institute of Health and Welfare, Australian Government n.d.).

5.2.2 France Scope Santé (Health Scope) allows users to find and compare the performance of hospitals or clinics throughout France. The website displays the performance of

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3900 hospitals and clinics in France in relation to quality and safety and is sponsored by the Haute Autorité de Santé (HAS). The HAS serves as an independent public authority of a scientific nature, which aims to contribute to the improvement of the quality of the health system and its regulation. Its tasks are to help ensure that all patients and users have permanent and equitable access to care as effective, safe, and efficient as possible. The HAS evaluates health products and publishes “guidelines” to improve professional practice. HAS notes that all data, including utilization, infections, quality and safety of care, patient experience, and certification, presented on the website comes from public sources (Scope Sante, n.d.). The most recent update of information focuses on the consumer’s experience of care in an ambulatory surgery center as more and more procedures are being performed in that setting.

5.2.3 Health Consumer Power House of Europe The Health Consumer Power House’s (HCP) mission is to analyze healthcare systems and countries’ healthcare provision and health policy implementation to create free user-friendly tools (disease-specific indexes) to empower citizens, physicians, patient organizations, politicians, and professionals working at different national bodies. HCP notes that it works in capacity-building processes and healthcare systems throughout Europe and the UK to strengthen quality care by providing open and transparent benchmarking and recommendations of strategies for improvement and change (Health Consumer Power House n.d.). HCP generates general and disease-­specific indexes and a tool to empower patients and physicians through comparing and reviewing healthcare provision and policies.

5.2.4 The UK The Private Health Information Network (PHIN) received a legal mandate in April 2015 to work with all hospitals providing private healthcare in the UK. That mandate comes from the Competition and Markets Authority (CMA). The CMA is the UK regulator of business competition and is responsible for protecting consumers from unfair behavior by companies (Private Healthcare Information Network n.d.). The PHIN had been working with 200 independent hospitals since 2012 to develop a way of collecting and publishing information. In 2014, an investigation by the CMA found that the information available to people considering private healthcare was inadequate. They noted that patients do not have enough information available to understand and compare their options to help them make informed choices. In response, the CMA published the Private Healthcare Market Investigation Order 2014. This imposed a duty on hospitals to submit data to PHIN as the new Information Organization (I.O.) for private health care. Since then, PHIN has reached out to around 600 facilities in the UK with more than 500 being required to

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participate and submit data for publication. PHIN has a duty to publish this data as performance measures to help patients make informed treatment choices. Over the next several years, the CMA has specified 11 performance measures for PHIN to publish at both hospital and consultant levels. These are: • Volumes of procedures undertaken • Average lengths of stay for each procedure • Infection rates (with separate figures for surgical-acquired and facility-acquired infection rates) • Readmission rates • Revision surgery rates • Mortality rates • Unplanned patient transfers (from either the private healthcare facility or the NHS Private Patient Unit (PPU) to an NHS facility) • A measure, as agreed by the I.O. and its members, of patient feedback and/or satisfaction • Relevant information, as agreed by the I.O. and its members and, where available, from the clinical registries and audits • Procedure-specific measures of patient-reported health outcome, as agreed by the I.O. and its members to be appropriate • Frequency of adverse events, as agreed by the I.O. and its members to be appropriate

5.3

US Government-Sponsored Consumer Data Tools

There is a continuing goal of providing transparency in data and promoting consumer choice by US government agencies. Patient safety and quality continue to be a driving force to improving the kind of data available to consumers but also to providers who are very in tune to the type of information that it publicly displayed about them and their facility.

5.3.1 Food and Drug Administration The Food and Drug Administration (FDA) sponsors a website known as “MedWatch” which provides information on the FDA Safety Information and Adverse Event Reporting Program. The site contains clinically important safety information and provides a link to report severe problems with human medical products. Healthcare professionals or consumers can report adverse events that are observed or suspected for human medical products, including serious drug side effects, product use/medication error, product quality problems, and therapeutic failures for: • Prescription or over-the-counter medicines, as well as medicines administered to hospital patients or at outpatient infusion centers

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• Biologics (including blood components, blood and plasma derivatives, allergenic, blood transfusions, gene therapies, and human cells and tissue transplants; for example, tendons, bone, and corneas) • Medical devices (including diabetes glucose-test kit, hearing aids, breast pumps, and many more products) • Combination products • Special nutritional products (dietary supplements, medical foods, infant formulas) • Cosmetics (such as moisturizers, makeup, shampoos and conditioners, face and body washes, deodorants, nail care products, hair dyes and relaxers, and tattoos) • Food (including beverages and ingredients added to foods) MedWatch alerts provide timely new safety information on human drugs, medical devices, vaccines, and other biologics, dietary supplements, and cosmetics. The alerts contain actionable information that may impact both treatment and diagnostic choices for healthcare professionals and patients (Food and Drug Administration n.d.).

5.3.2 Centers for Medicare & Medicaid Services (CMS) The Centers for Medicare & Medicaid Services offers information on hospitals, nursing homes, home health agencies, hospices, physicians and other health professionals, dialysis facilities, health plans, inpatient rehabilitation facilities, and drug plans. The site contains demographic information on various provider types and allows for side-by-side comparison of providers based on key quality measures. The site also contains information for the Department of Defense and Veterans Hospitals.

5.3.2.1 Hospital Compare The overall hospital rating summarizes a variety of measures on Hospital Compare, reflecting common conditions that hospitals treat, such as heart attacks or pneumonia. Hospitals may perform more complex services or procedures not reflected in the measures on Hospital Compare. The overall hospital rating shows how well each hospital performed, on average, compared to other hospitals in the USA. The overall hospital rating ranges from one to five stars. The more stars, the better a hospital performed on the available quality measures. The most common overall hospital rating is three stars. 5.3.2.2 Nursing Home Compare Nursing Home Compare allows consumers to find and compare nursing homes certified by CMS. This Website contains the quality of resident care and staffing information for more than 15,000 nursing homes around the country. The information on Nursing Home Compare includes:

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• How nursing homes have performed on health and fire safety inspections • How the nursing home is staffed with nurses and other healthcare providers • How well nursing homes care for their residents

5.3.2.3 Physician Compare CMS also created Physician Compare in December 2010 as required by the Affordable Care Act. The performance information on Physician Compare helps consumers make informed decisions about health care. The site contains information on participation in quality activities, performance information, and patient survey scores (Centers for Medicare & Medicaid Services n.d.-a). Quality Activity Participation Clinicians and groups can choose to participate in different quality activities, including various CMS quality programs such as the Quality Payment Program, adoption of electronic health records, and participating in the Million Hearts Program designed to prevent and manage cardiac disease. If a clinician or group participates in one or more of the CMS quality activities, Physician Compare displays a green check mark on their profile page. CMS notes that participation in CMS quality activities shows a commitment to quality care; participation alone doesn’t mean the clinician provides quality care but showing a commitment to quality is the first step in providing quality care. Performance Physician Compare shows performance information from clinicians and groups providing patients the best recommended care. Star ratings for groups show how well the group provided the recommended care to patients compared to the best performers for each measure. This performance information primarily comes from the Quality Payment Program (QPP). Star ratings for groups on Physician Compare are divided into these categories and reported when data are available: • • • • • • • •

Preventive care: general health Preventive care: cancer screening Patient safety Care planning Diabetes Heart disease Respiratory diseases Behavioral health

Additional performance information may be available for clinicians and groups who reported information to Medicare through a qualified clinical data registry (QCDR). A QCDR is a Medicare partner organization that has committed to improving the quality of patient care for patients. A QCDR collects and reports information using criteria and guidelines designed by the experts for that QCDR.

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Consumers should not use the information in isolation of other factors and may not find information about a clinician on the site since: • Not all clinicians and groups report the same information to Medicare, because not all clinicians provide the same services to patients. Also, not all services or types of care have measures available to report to Medicare. • Reporting information is not a reflection of quality. • The available performance information is just a snapshot of some of the care clinicians give to people with Medicare. Over time, CMS notes that they plan to improve the webistes to report information that will be easier to find and will have meaning for consumers as they try to make choices in their health care. Patient Survey Scores The majority of the patient survey scores come from the Consumer Assessment of Healthcare Providers and Systems (CAHPS), which is specifically for groups caring for people with Medicare. The survey asks patients about their experiences with clinicians in the groups they visit for care. It covers important topics, like how well the clinician communicates. Consumers are encouraged to use this information to learn about other patients’ experiences with the group and to make more informed healthcare decisions. Groups that participate in this survey get performance scores based on the information their patients reported about them.

5.3.3 Medicare Advantage Plan Finder The Medicare Plan finder helps Medicare Beneficiaries find a health plan (Preferred Provider Organization or Health Maintenance Organization) or a Medicare Drug plan. The site provides information on the plan’s demographic information, monthly premiums, drug coverage, and other benefits, and the quality of care provided. Quality is displayed using a star system common to many of the Medicare sites. A star symbol with the number five in the center near a plan name means that Medicare has given the plan a five-star rating (the highest rating). If a plan has a five-star rating, people with Medicare can switch into that plan at any time during the year, even if it is not during an enrollment period. This is a method of incentivizing plans to provide high-quality care and for beneficiaries to choose plans proving high-quality care. For plans that cover health services, the overall rating tells patients and families about the plan’s quality in five areas: • Staying healthy: Whether members got various screening tests, vaccines, and other checkups to help them stay healthy. • Managing chronic (long-term) conditions: How often members with certain conditions got recommended tests and treatments to help manage their conditions. • Member experience with the health plan: Member ratings of the plan.

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• Member complaints and changes in the health plan’s performance: How often members had problems with the plan. Includes how much the plan’s performance improved (if at all) over time. • Health plan customer service: How well the plan handles member calls and questions. For plans that cover prescription drugs, the overall rating tells you about the plan’s quality in four areas: • Drug plan customer service: How well the plan handles member calls and questions. • Member complaints and changes in the drug plan’s performance: How often members had problems with the plan. Includes how much the plan’s performance improved over time. • Member experience with the drug plan: Member ratings of the plan. • Drug safety and accuracy of drug pricing: How accurate the plan’s pricing information is and how often members with certain medical conditions are prescribed drugs in a way that is safer and clinically recommended for their condition. For plans that cover both health services and prescription drugs, the overall rating covers all of the areas above. For health services, quality information comes from: • • • •

Member surveys Information clinicians submit to Medicare Information plans submit to Medicare Medicare’s regular monitoring activities For prescription drug coverage, quality information comes from:

• Member surveys • Billing and other information that plans submit to Medicare • Medicare’s regular monitoring activities

5.4

State Government Report Cards

Many states sponsor their own report cards although they may also draw information from the federal report cards. Some states also include additional information that is not available of the federal websites such as information on assisted living facilities or special programs they may have in their Medicaid programs. Many of the state report cards had a start in the early 2000s when consumers began to demand more information about preventable hospital-acquired infections. There were several state bills passed that required them to post hospital- or healthcare-associated infection rates. Many states started with laws that required the reporting of central

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line-associated bloodstream infections in adult intensive care units (ICUs). Tremendous improvements were made in preventing these infections and effort moved on to such areas as methicillin-resistant Staphylococcus aureus and Clostridium difficile infections as well as catheter-associated urinary tract infections. Some states, such as Pennsylvania, were well prepared to begin to meet the consumer demands. Pennsylvania established the Pennsylvania Healthcare Cost Containment Commission (Pennsylvania Healthcare Cost Commission n.d.). The Council is an independent state agency formed under Pennsylvania statute (Act 89 of 1986, as amended by Act 3 of 2009) to address rapidly growing healthcare costs. The Council’s strategy to contain costs is to stimulate competition in the healthcare market by: • Giving comparative information about the most efficient and effective healthcare providers to individual consumers and group purchasers of health services • Giving information to healthcare providers that they can use to identify opportunities to contain costs and improve the quality of care they deliver The law assigns explicitly the Council three primary responsibilities: • To collect, analyze, and make available to the public data about the cost and quality of health care in Pennsylvania • To study, upon request, the issue of access to care for those Pennsylvanians who are uninsured • To review and make recommendations about proposed or existing mandated health insurance benefits upon request of the legislative or executive branches of the Commonwealth Many other states across the country developed similar legislation and began to collect and publish data.

5.5

Clinical Decision Support Tools

Another tool designed to help clinicians and patients decide on the best care options is clinical decision support. Clinical decision support (CDS) provides timely information, usually at the point of care, to help inform decisions about a patient’s care. CDS tools and systems help clinical teams by taking over some routine tasks, warning of potential problems, or providing suggestions for the clinical team and patient to consider (Agency for Healthcare Research and Quality n.d.-a). The Agency for Healthcare Research and Quality (AHRQ) notes that the main purpose of CDS is to provide timely information to clinicians, patients, and others to inform decisions about health care. Examples of CDS tools include order sets created for particular conditions or types of patients, recommendations, and databases that can provide information relevant to particular patients, reminders for

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preventive care, and alerts about potentially dangerous situations. When used effectively AHRQ notes that CDS can potentially lower costs, improve efficiency, and reduce patient inconvenience by alerting clinicians about possible duplicate tests a patient may be about to receive and raising awareness about other possible alternatives. AHRQ notes that CDS can be used on a variety of platforms such as the Internet, personal computers, electronic medical record networks, handheld devices, or written materials. AHRQ’s CDS Initiative includes a variety of research projects and outreach efforts to develop an agreement in the healthcare field around the use of CDS to promote safe and effective health care. Each part of the initiative attempts to engage clinicians, provider organizations, guideline, and quality measurement developers and information technology professionals in the ongoing work to improve making healthcare decisions using CDS systems.

5.6

Consumer Apps

5.6.1 A  gency for Healthcare Research and Quality (AHRQ) QuestionBuilder App The AHRQ QuestionBuilder app helps patients and caregivers prepare for medical appointments and maximize visit time. People can download the mobile app using the select or create questions to ask, save the questions to a calendar appointment, or send them to any email address so that the information is handy during medical visits. AHRQ encourages the use of the QuestionBuilder app to: • Prepare and organize questions by type of medical encounter • Take photos of insurance cards, pill bottles, or even a skin rash • Access consumer education materials and videos The evidence-based content and questions created with the app are available at no charge for phones, tablets, or laptops via both iOS and Android operating systems. All input resides on users’ own devices; nothing is stored in the app (Agency for Healthcare Research and Quality n.d.-b).

5.6.2 What’s Covered App CMS released the “What’s Covered” app to provide patients and families with information on Medicare coverage for medical test or service. The app is provided at no cost to patients and families and delivers accurate cost and coverage information on a smartphone. Patients and families can view the app in the doctor’s office, the hospital, or anywhere they have their phone. Once downloaded, patients and families can use the app to get reliable Medicare information even when off-line (Centers for Medicare & Medicaid Services n.d.-b).

References

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The app delivers general cost, coverage, and eligibility details for items and services covered by Medicare Part A and Part B. Patients and families can search or browse to learn what’s covered and not covered; how and when to get covered benefits; and basic cost information. They can also get a list of covered preventive services.

5.7

Summary

The demand for information continues to grow as technology improves and consumers become more engaged in their healthcare decisions. Several sources of information currently exist from both private and government entities around the world. Organizations are now developing more apps to bring information quickly to the consumer. While much progress is being made, the need is still great for reliable data upon which decisions can be made with the patient, family, and clinician.

References Agency for Healthcare Research and Quality. Clinical decision support. n.d.-a. https://www.ahrq. gov/professionals/prevention-chronic-care/decision/clinical/index.html. Accessed 1 June 2019. Agency for Healthcare Research and Quality. QuestionBuilder App. n.d.-b. https://www.ahrq.gov/ patient-safety/question-builder.html. Accessed 16 June 2019. Australian Institute of Health and Welfare, Australian Government. n.d.. https://www.myhospitals. gov.au/. Accessed 1 June 2019. Centers for Medicare & Medicaid Services. About physician compare. n.d.-a. https://www.medicare.gov/physiciancompare/#about/improvinghealthcarequality. Accessed 1 June 2019. Centers for Medicare & Medicaid Services. What’s covered app. n.d.-b. https://www.medicare. gov/blog/whats-covered-mobile-app. Accessed 16 May 2019. Choosing Wisely. n.d.. http://www.choosingwisely.org/our-mission/. Accessed 1 June 2019. Consumer Reports. Health. n.d.. https://www.consumerreports.org/health/. Accessed 30 May 2019. Food and Drug Administration. MedWatch: The FDA safety information and adverse event reporting program. n.d.. https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverseevent-reporting-program. Accessed 1 June 2019. Health Consumer Power House. n.d.. https://healthpowerhouse.com/about-us/#our-mission. Accessed 1 June 2019. Healthgrades. Editorial policy. n.d.. https://www.healthgrades.com/content/editorial-policy. Accessed 30 May 2019. National Committee for Quality Assurance. Report cards. n.d.. https://reportcards.ncqa.org/#/. Accessed 30 May 2019. Pennsylvania Healthcare Cost Commission. n.d.. http://www.phc4.org/default.htm. Accessed 1 June 2019. Private Healthcare Information Network. n.d.. https://www.phin.org.uk/about/our-mandate. Accessed 1 June 2019. Scope Sante. n.d.. https://www.scopesante.fr/#/. U.S. News. Health. n.d.. https://health.usnews.com/best-hospitals.viding. Accessed 30 May 2019. WebMd. About. n.d.. https://www.webmd.com/about-webmd-policies/about-what-we-do-for-ourusers. Accessed 1 June 2019.

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Quality Measures for Patient, Family, and Caregiver Engagement

6.1

 linical Quality Measures in Patient and Family C Engagement

The use of clinical quality measures for improving health care and informing performance-­based payment methods is becoming increasingly important as new value-based payment models evolve. Various forms of health information technology allow for the collection of data that can be analyzed and provided to clinicians and healthcare systems for measurement of care coordination; federal, state, and local governments for oversight and payment; and most importantly patients, families, and caregivers for healthcare decision-making. The collection and exchange of healthcare information allow doctors, nurses, pharmacists, other healthcare providers, and patients to appropriately access and securely share a patient’s vital medical information electronically—improving the speed and quality of clinical quality measurement. While it is important to gather clinical data to make decisions regarding the course of care, it is just as important to collect information to measure the patient’s experience of care, about what they want to get from the treatment, and to engage them in the decision-making process. Patient-reported outcome measures provide information to patients on how other patients have achieved their intended goals from clinicians and provide information to clinicians to improve the quality of care that they provide.

6.2

Evolution of Quality Measurement

Avedis Donabedian was instrumental in the 1950s and 1960s in developing a method to measure the quality of health care. He advanced the field by analyzing healthcare systems and resources to determine the impact on the overall quality of care (Donabedian 1966). In 1966 Avedis Donabedian introduced a classification of quality measures including three components of structure, process, and outcome. Donabedian notes © Springer Nature Switzerland AG 2020 J. Moody-Williams, A Journey towards Patient-Centered Healthcare Quality, https://doi.org/10.1007/978-3-030-26311-9_6

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that structure includes such things as the administrative structure and operations of programs and institutions providing care and fiscal organization (Centers for Medicare & Medicaid Services 2019). Donabedian described process measures as an assessment of the application of what is known to be good practices in care. This would include, for example, assessing the performance of certain recommended diagnostic and screening test. The process of performing the tests, in this case, would presumably lead to the desired outcome of prevention or early detection of disease processes. He described outcome measures as the components of care delivered that focuses on recovery from the intervention, restoration of function, and survival (Donabedian 2005). Today outcome measures often focus on mortality, hospital readmissions, and absence of complications.

6.3

The Meaningful Measurement Framework

The “Meaningful Measures” framework is the Centers for Medicare and Medicaid Services’ (CMS) new initiative which identifies the highest priorities for quality measurement and improvement (Centers for Medicare & Medicaid Services 2017). It involves only assessing those core issues that are the most critical to providing high-quality care and improving individual outcomes. The Meaningful Measures initiative was developed collaboratively with input from a wide variety of stakeholders. It also draws on prior work performed by the Health Care Payment Learning and Action Network (HCPLAN), other federal agencies, the National Quality Forum, and the National Academy of Medicine. It includes perspectives from patient representatives, clinicians and providers, measure developers, and other experts such as the Core Quality Measures Collaborative. Meaningful Measures is intended to move payment toward value by focusing everyone’s efforts on the same quality areas. CMS identified the following important principles for determining whether a measure is meaningful: 1 . Addresses high-impact measure areas that safeguard public health 2. Patient centered and meaningful to patients 3. Outcome based where possible 4. Fulfills requirements in programs’ statutes 5. Minimizes the level of burden for providers 6. Significant opportunity for improvement 7. Addresses measure needs for population-based payment through alternative payment models 8. Aligns across programs and with other payers (Medicaid, commercial payers) The Meaningful Measures framework contains 19 Meaningful Measure areas organized into specific, overarching healthcare quality priorities. All of the measures are intended to improve the health and well-being of people. Four of the

6.4 Health Care Payment Learning & Action Network

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Table 6.1  CMS meaningful measures, Centers for Medicare & Medicaid Services 2019 Meaningful measures areas Care is personalized and aligned with patient’s goals

End-of-life care according to preferences Patient’s experience of care

Patientreported functional outcomes

Quality priorities

Description of need (Excerpts)

Strengthen person and family engagement as partners in their care

“… researchers have been using goal-attainment scaling for decades to measure the effect of treatment for conditions such as dementia and for comprehensive geriatric assessments.” Ensure that the care delivered is in concert with individual’s goals, aligned with the care plan co-created with their doctor and evidenced by people making informed decisions about their care Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record. Ensure that care delivered at the end of life is in concert with patient/ family preferences, which includes knowing those desires and providing aligned care and services Recent average positive reports of healthcare experiences showed variation across a range of factors, for example, from 52% for “care transitions” to 87% for “discharge information.” Actively engage patients in reporting their experiences, including satisfaction with care and staff, and community inclusion Slightly more than 15% of adults report physical functioning difficulties. Improve or maintain the patient’s quality of life by addressing physical functioning that affects their ability to undertake daily activities most important to them

Strengthen person and family engagement as partners in their care Strengthen person and family engagement as partners in their care Strengthen person and family engagement as partners in their care

Meaningful Measures area specifically point to the goal of having care personalized and aligned with the patient’s goal, as noted in Table 6.1 (CMS Meaningful Measures Resource Hub 2017).

6.4

Health Care Payment Learning & Action Network

The Health Care Payment Learning & Action Network (HCPLAN) is a public-­ private partnership whose mission is to accelerate the healthcare system’s transition to alternative payment models (APMs) by aligning the innovation, power, and reach of the private and public sectors. The HCPLAN was launched in 2015 with membership from a wide variety of stakeholders including federal and state governments and academic centers, associations and professional societies, commercial payers, healthcare providers, patients, and consumer advocates, private employers, health plans, and many others. The HCPLAN’s stated purpose is to facilitate the shift from the fee-for-service (FFS) payment model to a model that pays providers for quality care, improved health, and lower costs. The HCPLAN provides resources and learning opportunities to catalyze movement toward the adoption of alternative payment models (APMs) and established a goal of tying 50% of US healthcare payments to APMs by the end of

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2018. In 2018 the HCPLAN APM measurement effort advanced the following for 2017 payments: • 41% of healthcare dollars in Category 1 (e.g., traditional FFS or other legacy payments not linked to quality) • 25% of healthcare dollars in Category 2 (e.g., pay-for-performance or care coordination fees) • 34% of healthcare dollars in a composite of Categories 3 and 4 (e.g., shared savings, shared risk, bundled payment, or population-based payments) They note that these results highlight a continued move away from a fee-for-­ service system that reimburses only on volume, and toward patient- and value-­ centered APMs (Health Care Payment Learning & Action Network 2018). The HCPLAN has developed several resources and white papers to support the movement. The papers were developed with multidisciplinary stakeholder involvement and released for public comment before finalizing. The HCPLAN has a strong consumer focus and has worked with patients and families to develop resources such as the “Principles for Patient-and Family-­ Centered Payment.” These principles, produced by the Consumer and Patient Affinity Group, are intended to help guide the development of new payment strategies. They provide guidance and aspirational direction to ensure that we address the needs and priorities of patients and families as we transition to value-based payment. The principles rest on the conviction that consumers, patients, and families are essential partners in every aspect of transforming health care and improving health (Health Care Payment Learning and Action Network n.d.).

6.5

Measures Collaborative

One common area of complaint regarding quality measurement is the lack of alignment between payers, oversight and accreditation entities, clinical registries, health systems, and other entities. Each entity may require the reporting of quality measures in a slightly different manner or completely different quality measures. There are several efforts underway to align measures across many stakeholders. The Core Quality Measure Collaborative (CQMC) is a broad-based coalition of healthcare leaders convened by America’s Health Insurance Plans (AHIP) starting in 2015. The Collaborative convenes a wide array of stakeholders, including CMS, health insurance providers, medical associations, consumer groups, and purchasers. The CQMC works on (1) ongoing maintenance of the existing core measure sets to reflect the changing measurement landscape, including, but not limited to, changes in clinical practice guidelines, data sources, or risk adjustment; (2) expanding into new clinical areas not yet addressed; and (3) identifying gaps in measurement and challenges in implementation in order to advance adoption of the core sets.

6.6 Methods of Collecting Data for Quality Measurement

6.6

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Methods of Collecting Data for Quality Measurement

Quality measures are only as good as the data from which they are derived. Data are collected by several methods. In the early inception of quality measurement, most measures were either calculated using data from administrative claims or manual abstraction of a medical record.

6.6.1 Claims Data Many types of process and outcome measures are calculated from administrative claims data. Common measures calculated from claims may include assessing whether screening exams have been completed, whether patients are readmitted to the hospital within a certain time frame, and mortality rates for multiple conditions. Claims-derived measures have many benefits in that the data is readily available from billing data, thus requiring no additional work by clinicians. They also allow for comparing large numbers of patients for population-based measures. Data analytics capabilities are also improving to allow for more rapid analysis and predictive models using artificial intelligence. Administrative claims also have its drawbacks in that the claims may contain errors or have important fields necessary for calculating the measures missing. Many of the required clinical findings to develop the measures may not be included with the administrative data since claims have their origin in billing information versus clinical information.

6.6.2 Chart Abstraction Chart abstraction involves selecting charts, usually a random sample, and going through the charts to find certain data elements and manually recording the elements on an abstraction tool. For example, you may review the medical record to determine when discharge planning was started and completed and if the patient verbalized understanding of the information. Chart abstraction has many advantages in that you are getting the information directly from the official record of care, you can look in several different places to find the information if it is not all in one place, you can abstract clinical information relevant to the condition or procedure under study, and you can accurately find information for risk adjusting the measure. The downside of chart abstraction is that it is usually very resource intensive in that it requires human resources to select and review the medical record. Chart abstraction may also limit the amount of information that can be collected for purposes of reviewing large populations because of the number of charts to be reasonably manually abstracted.

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6.6.3 Hybrid Quality Measures The number of pure chart-abstracted measures continues to decrease as the burden of measurement increases and other mechanisms of collecting data develop. There are also hybrid measures which include portions of chart-abstracted data paired with claims data or other sources of data such as registries. Hybrid measures are also a reliable source of data given the combination of administrative data and information directly from the medical record but can also be time consuming to collect given the need to review the medical record for additional information by those who are professionally trained in reviewing medical information.

6.6.4 Quality Measures from Electronic Health Records Electronic clinical quality measures (eCQMs) use data electronically extracted from electronic health records and health information technology systems to measure the quality of health care provided. Hospitals, professionals, and clinicians use eCQMs to give feedback on their care systems and to help them identify opportunities for clinical quality improvement. Payers, CMS, and other entities such as the Joint Commissions use eCQMs in value-based care programs that reimburse providers based on quality reporting (eCQM Resource Center n.d.). While there is still a great deal of work to be done to efficiently collect quality data from electronic medical records, there are several benefits to collecting quality measurement data through EHRs to reduce the burden associated with chart abstraction and hybrid measures and the ability to apply data analytics to a greater sense of clinical information to get a broader perspective of patient care and opportunities for improvement. Quality data from EHRs is also timelier and can provide opportunities for rapid cycle quality improvement and clinical decision support.

6.6.5 Q  uality Measures from Surveys and Patient-Reported Outcome Measures Health care is not something that happens to people but something that happens with them. Too often as professionals, we make decisions without incorporating the goals, values, and voice of patients, families, and caregivers. While it is important to gather clinical data and make decisions regarding the course of care, it is just as important to collect information on the patient’s experience of care and about what they want to get from the course of treatment and to engage them in the decision-­ making process. There are several methods of collecting data regarding patient’s experience, desires, and outcomes. One of the methods that have been widely used for several years is the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) which is an Agency for Healthcare Research and Quality (AHRQ) program that began in 1995. Employers, CMS, commercial insurers, and others use CAHPS as a

6.6 Methods of Collecting Data for Quality Measurement

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part of their value-based purchasing programs to determine patient experience. AHRQ defines patient experience as encompassing the range of interactions that patients have with the healthcare system, including their care from health plans, and doctors, nurses, and staff in hospitals, physician practices, and other healthcare facilities. They note that the terms patient satisfaction and patient experience are often used interchangeably, but they are not the same thing. The CAHPS surveys cover topics such as providers’ ability to communicate with patients for purposes of understanding their health condition, ease of accessing needed care, being treated with courtesy and respect, and several other items (About CAHPS 2018). While assessment of the patient’s experience is important, patients also want to ensure that they have the outcomes they are seeking from a healthcare encounter. Patient-reported outcome measures provide information to patients on how other patients have achieved their intended goals from clinicians and provide information to clinicians to improve the quality of care that they provide. Several methods are emerging to gather information from patients. One method of collecting information to increase the power of the patient voice in clinical care and to strengthen research quality is the PROMIS® (Patient-Reported Outcomes Measurement Information System). PROMIS® is a set of person-centered measures that evaluate and monitor physical, mental, and social health in adults and children. It can be used with the general population and with individuals living with chronic conditions. The National Quality Forum (NQF) has explored the importance of patient-­ reported outcomes through several consensus panels and educational offerings. In their report Patient Reported Outcomes (PROs) in Performance Measurement, the NQF recognized that patients are the authoritative source of information on outcomes beyond experience with care. Patients provide valuable information on health-related quality of life, functional status, symptom and symptom burden, and health behaviors. NQF suggests that there are two critical steps to engage patients by building capacity and infrastructure to capture patient-reported outcomes routinely and then to use these data to develop performance measures to allow for accurate appraisals of quality and efficiency. One of the NQF guiding principle is that the patient-reported outcome measure must be “implementable.” While consideration must be given to many factors during implementation, the ability to collect and report the data for PROMs and adapting them to computer-based platforms or other formats is essential and challenging (National Quality Forum n.d.).

6.6.6 Clinical Data Registries and Quality Databases One method of collecting information for quality measurement, improvement, and clinical research is through clinical data registries. Registries collect information about individuals, conditions, procedures, health status, demographics, and other information that help to inform clinicians, patients, researchers, and others about a patient population. Registries can be developed and maintained by various entities such as professional clinical associations and societies; local, state, and national governments; private companies; and others.

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Registries can be used to track trends, determine quality improvement opportunities, identify differences in reaction to various treatments, and inform future studies on a condition, procedure, or prevention effort. There are more than a hundred different types of clinical data registries. The ANA supported the development of the National Database of Nursing Quality Indicators® (NDNQI®) as one source of collecting data to improve the science of nursing care. The database is Press Ganey solution with more than 2000 US hospitals and health systems participating in the NDNQI program. The ANA reports that the NDNQI provides data to measure nursing quality, improve nurse engagement, strengthen the nursing work environment, assess staffing levels, and improve reimbursement under current pay for performance policies (American Nurses Association 2017). The database is used for a number of research efforts. Unit-level data is available for review of quality indicators and outcomes. Linkages between nurse staffing levels and patient outcomes have already been demonstrated using this database (Montalvo 2007).

6.6.7 HEDIS Collection The Healthcare Effectiveness Data and Information Set (HEDIS) is a widely used set of performance measures used in the managed care industry, developed and maintained by the National Committee for Quality Assurance (NCQA). The NCQA reports that 190 million people are enrolled in health plans that report HEDIS results (National Committee for Quality Assurance n.d.). HEDIS was designed to allow consumers to compare health plan performance to other plans and national or regional benchmarks. Many payers, health systems, and employers use HEDIS collected data for purposes of assessing quality of care. The Centers for Medicare & Medicaid Services (CMS) uses HEDIS data in its Medicare Advantage program and publicly displays results on its website. Many states use HEDIS data for contracting purposes when awarding Medicaid managed care contracts.

6.6.8 Health Information Exchanges Electronic health information exchange (HIE) allows doctors, nurses, pharmacists, other healthcare providers, and patients to appropriately access and securely share a patient’s vital medical information electronically—improving the speed, quality, safety, and cost of patient care (Healthit.gov 2019). HIE helps facilitate coordinated patient care, reduce duplicative treatments, and avoid costly mistakes. This practice is growing among health providers because the need for HIE is clear, and the HIE benefits are significant. The method of exchange varies among state, regional, and national levels; however, the primary concept is that information is exchanged among multiple entities that need to access the information to provide coordinated care. Data through health information exchanges also serve as a mechanism to improve healthcare quality as it can provide information from multiple settings so

References

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that a clinician can have a complete picture of the care provided to a patient, even if not in the same healthcare facility for which they practice.

6.7

Summary

There is a continuing need to advance the field of patient and family engagement using patient-reported outcomes, quality measurement, and health information exchange for supporting transparency for patients, clinicians in the provision of care, and researchers in advancing the field. Even the best source of data may be meaningless if it is not actionable and used continually to improve, inform, and inspire the best quality of care for patients and their families. A coordinated approach to the generation of data, keeping the user in mind, will facilitate the ability to reach the destination of improved seamless collection and use of quality measures.

References About CAHPS. Rockville, MD: Agency for Healthcare Research and Quality; April 2018. http:// www.ahrq.gov/cahps/about-cahps/index.html. American Nurses Association. Nurse quality research studies. 2017. https://www.nursingworld. org/practice-policy/innovation/quality/. Retrieved 24 Feb 2019. Centers for Medicare & Medicaid Services. CMS meaningful measurement framework. Meaningful measures hub. Baltimore: CMS. Oct 12, 2017. Retrieved 20 Jan 2019. Page last modified: 21 Sept 2018. Centers for Medicare & Medicaid Services. CMS EHR meaningful use overview. EHR Incentive Programs. Center for Medicare & Medicaid Services. Oct 12, 2019. Archived from the original on 30 October 2011. Retrieved 31 Oct 2011. CMS Meaningful Measures Resource Hub. 2017. https://www.cms.gov/Medicare/QualityInitiatives-Patient-Assessment-Instruments/QualityInitiativesGenInfo/MMF/General-infoSub-Page.html#GeneralInfo. Donabedian A.  Evaluating the quality of medical care. (A Series of publicly funded papers Commissioned by the Health Services Research Study Section of the United States Public Health Service. Discussed at a Conference Held in Chicago, October 15–16, 1965 (Jul 1966), pp. 166–206. Milbank Mem Fund Quart. 1966;44(3):166–206. https://doi.org/10.2307/3348969 Donabedian A. Evaluating the quality of medical care. 1966. Milbank Quart. 2005;83(4):691–729. eCQM Resource Center. About eCQM. n.d.. https://ecqi.healthit.gov/ecqms. Retrieved 23 Feb 2019. Health Care Payment Learning & Action Network. Measuring progress: adoption of alternative payment models in commercial, Medicaid, Medicare advantage, and Medicare fee-for-service programs. October 22, 2018. Health Care Payment Learning and Action Network. Principles for patient-and family-centered payment. n.d.. http://hcp-lan.org/workproducts/cpag-principles.pdf. Retrieved 17 June 2019. Healthit.gov. https://www.healthit.gov/topic/health-it-and-health-information-exchange-basics/whathie. July 2019. Retrieved 24 Feb 2019. Montalvo I. The National Database of Nursing Quality Indicators TM (NDNQI®). Online J Issues Nurs. 2007;12(3):Manuscript 2. National Committee for Quality Assurance. HEDIS and performance measurement. n.d.. https:// www.ncqa.org/hedis/. Retrieved 24 Feb 2019. National Quality Forum. (1/10/13). Patient Reported Outcomes (PROs) in performance measurement. Contract HHSM-500-2009-00010C Task order 14.2. n.d.

7

Considerations for Family and Caregivers and Crucial Conversations

7.1

The Caregiving Journey

Becoming a caregiver is an awesome responsibility and an automatic departure from the familiar. Routines must change, emotions become fluid, and uncertainty is a certainty. Caregivers must accept a change in lifestyle and accept the role of service. This role is not for the meek at heart. Some people live their entire lives as a caregiver to others. Others are forced into an unexpected circumstance of caregiving. Regardless of the reason, they have been called for a special purpose of caring for their parent, spouse, or child with special needs (Moody-Williams 2012). According to the U.S. Department of Labor Statistics, 16% of the civilian noninstitutional population aged 15 and over (41.3 million people) provide unpaid eldercare. About one-fourth (26%) of eldercare providers engage in unpaid eldercare on a given day (U.S. Department of Labor 2017). Many caregivers must work, take care of their families, and provide care, which can result in conflicts between these responsibilities. Many caregivers are taking care of an elder as well as their children. There were 8.7 million eldercare providers who were parents of children living at home. Of these parents, about one-third (33%) had a child under age 6, and the remainder (67%) were parents whose youngest child was between the ages of 6 and 17. Table 7.1 provides information on the number and percent of eldercare provider in the USA (U.S. Department of Labor Statistic 2015–2016 n.d.). It is important for healthcare professionals to consider the impact of a loved one’s illness on caregivers for several reasons including the following: • The caregiver may be the one that has to make or influence many of the decisions about the care of the patient. • The caregiver can provide valuable information that may help to determine the best treatment for the patient and may be able to provide information about their clinical status and insights into related social determinants of health. • The caregiver may be critical to discharge planning as they may be the ones that have to help take care of the patient at discharge. © Springer Nature Switzerland AG 2020 J. Moody-Williams, A Journey towards Patient-Centered Healthcare Quality, https://doi.org/10.1007/978-3-030-26311-9_7

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Table 7.1  U.S.  Department of Labor Statistic 2015–2016. https://www.bls.gov/news.release/ elcare.t01.htm Number and percent of US population who were eldercare providers (number in thousands) Characteristic Total Civilian populationa Eldercare providers Number Percent of population Age Total, 15 years and over 256,387 41,324 16.1 15–24 years 42,723 4876 11.4 25–34 years 43,161 3590  8.3 35–44 years 39,759 4790 12.0 45–54 years 42,520 9086 21.4 55–54 years 40,953 9961 24.3 65 years and over 47,271 9021 19.1 Noninstitutional

a

• The patient may have concerns about the health of the caregiver or feel that they are a burden to them, thus impacting their emotional status. • Not everyone is called for the job of caregiving. The healthcare professional may be able to observe that the caregiver may not be in the best position to provide for the safety or well-being of the patient and may, be causing more harm to the patient than benefit. Clinicians may be in the position of trying to determine whom to consider as a family member or caregiver when caring for a patient. It is important to realize that the family and caregiver are the ones that the patient identifies as such, even if they don’t fit the traditional description of a family member. The healthcare professional should engage the patient to determine the relationships they want the family member or caregiver to have in the process to ensure privacy and avoid inadvertent transfer of confidential information. Most healthcare settings now ask in writing whom you can communicate with about the patient’s status. Voices from Patients, Families, Caregivers, and Clinicians: Susie’s Story Continued

Sometimes we have our lives all planned out. Dinner at 6:00. Vacation in July. Meeting on Thursday, Class at 10:00. Retirement in 2022. Just as we think we have it all figured out, something comes along and changes our plans. It could be suddenly or could be a slow progression of a disease that we see coming but feel helpless to do anything about. Very few of us plan that on Thursday, I will be a caregiver. Yet, this is where I found myself. My mother was doing well, traveling, and moving about just before her illness. She was in fact planning and beginning to pack for a trip to Canada that she was to take a few weeks later when she said, “I don’t feel very well.” We went to the emergency department, and they provided treatment and sent her home. She did not get better, and I took her back to the hospital. Eight months later, she passed away.

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It was during those 8 months that I learned so much about caregiving, the process of transitioning from a healthy independent person to one dependent on someone else, trusting in God to take care of our loved ones and the triumph that can come at the end of a caregiving journey. So, the plans were shattered for her, no trip to Canada, no recollection of Thanksgiving dinner, no ability to go to her granddaughter’s graduation. It immediately changed for her and me as the caregiver: no leisure time to go out with the girls, evenings filled with hospital visits, nursing home inspections, or making crucial decisions. But what I learned is that while we are not in control of these situations, we can choose to be defeated or to we can be courageous and tackle the most recent change in our plans head-on.

Families and caregivers face several challenges that healthcare professional should be aware of as it may impact the treatment plan for the patient. The patient may depend on that member of the family to make the major decisions about the course of treatment. They may be the ones that will ensure that the care plan is carried out when the patient leaves the treatment facilities, and thus may be central to ensuring that the patient does not have a return visit to the hospital as an unplanned readmission. They may be in precarious health themselves, and if they are not considered and listened to they may leave the patient with little home support. Patients also know when their families and caregivers are upset or in their opinion overburdened.

Voices from Patients, Families, Caregivers, and Clinicians: Susie’s Story Continued

We make all the necessary trip cancellation arrangements and concentrate on getting mom well. She was in the hospital for 3 days and had become very weak. Every test had been done and there were some recommendations for outpatient tests that we would complete after discharge. She had lost a lot of weight over the past few weeks. We suspected that perhaps there was cancer somewhere although none of the tests had shown this to be the case. We would follow up outpatient, but given her weakened condition the recommendation was to transfer her to a rehabilitation center so she could regain her strength. Decision number one, should she be discharged to home or discharged to rehab? Mom never wanted to go into a nursing home or rehabilitation center. I could see she was visibly weak and believed that if she went to the rehab center for a few weeks she could get on her feet. We could then complete the outpatient workup that was recommended.

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The doctor strongly recommended that she go, and then she asked her what she wanted to do. My mom looked at her and said, “Whatever my daughter thinks is best.” She had come to rely on me as the trusted source. She knew I had my hands in God’s hand, and that I loved her very much. She thought that I would do the right thing. This was an awesome responsibility. I think I acted more on my medical knowledge than spiritual at the time but prayed for God to intervene. For many weeks to come, I relied heavily on my knowledge of the medical system and the supports available, and my knowledge of quality improvement techniques. All in all, I thought I had it under control.

7.2

Making Hard Decisions

Decisions must also be made regarding where the patient will reside after an interaction with the healthcare system. They may be able to return home to their routine, or they may require care in a skilled nursing facility, assisted living, or home health care. Caregivers must begin to pull together resources when making decisions with the patient regarding care. They often review websites that rate the quality of care, read every brochure, speak with others, and draw upon their past experiences with the healthcare system. Caregivers may find the research helpful when looking at the percentage of times the nursing home had people develop pressure ulcers, and how they ranked with nurse staffing ratios and track record for managing pain in the residents. They explore whether the facility has 24-h visitation for family members, how many times they can expect the doctor to visit, whether they have a wound care specialist or other therapeutic specialties, and the quality of the physical therapy services. They may have the opportunity to talk to other residents to ask the residents what they thought of the food and to observe for cleanliness. Caregivers often think of things such as convenience when deciding on where to seek health care but soon learn that what may be the most convenient for them was not necessarily the best for their loved one. They may conclude that even if they must drive a little further, take the bus a little longer, or walk an extra mile, it was better to be in a reputable facility. Patients often entrust decisions regarding the course of care to their families and caregivers which may mean that they have to make hard choices such as sending their loved one to the place that can provide the best care at the time even if the patient is a bit reluctant or fearful. Knowing the best method of making these hard decisions can help reduce stress for the caregiver as well as the person needing the care.

7.3 Having Crucial Conversations

7.3

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Having Crucial Conversations

Many times, advance preparation has not occurred, adding to an already stressful situation. People may not have an idea of finances when illness comes, and they may not remember where they have placed important papers. Healthcare professionals may find themselves in the middle of managing family issues during the time of illness. One family member may say, “I know Mom wants this,” while another says, “I know Mom wants that,” and division occurs. If more conversations had happened a little earlier, and if things had been written down before illness, it may not be a question about what mom wants. Families should be encouraged to plan ahead during routine ambulatory visits when they are relatively well so that the family and healthcare professionals can team together to ensure that the patient’s desires and goals are being achieved. Most patients tend to heed the advice of their clinicians, clergy, family, and friends. The American Association of Retired People (AARP) has a guide entitled “Prepare to Care” that can be recommended to families and caregivers going through the process of decision-making (American Association of Retired People (AARP) n.d.). The guide serves as a practical tool to help caregivers as they care for their family member or close friend. It includes useful information, resources, and checklists to help them get organized and find the support that they might need. Once illness begins, there are tools that you can use to help determine which hospitals are the best in an area. Which nursing homes specialize in Alzheimer’s care? What home health agencies are the best? Medicare.gov has a website that provides valuable information in all of these settings. For example, stars are assigned to nursing homes ranging from one to five stars. While this information is good, it should not be used in isolation; it is a good indicator of what questions you should ask of a facility. Voices from Patients, Families, Caregivers, and Clinicians: Susie’s Story Continued

Eventually, I decided to bring mom home. I was concerned about how this decision would impact my family. As I was about to broach the subject with my husband, he said to me, “let’s bring mom home.” I’m sure it’s more than he had ever signed up for in the “better or worse” department, but he was there, fully supportive. “I’ll even help,” he said. He said that he just can’t clean up any bodily fluids (something he didn’t like to do very much even for our own kids), but he can do anything else. I told my mom that the doctors didn’t think that they could do very much more for her. I asked her if she would like to seek more opinions, or would she prefer to come home. Her face lit up, and without a word of hesitation, she said, “Come home.” I knew that if I made one step, God would take care of the rest. The next day I discussed with the hospice nurse about giving care at

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home rather than the nursing home; I spoke with the doctor about what would be involved with discharge. I know that coming home is not always the best answer for everyone. Some people will need the support of the nursing home. When this is the case, the caregiver should not feel guilty about that decision. For mom, and this moment, we were able to grant her desire. She was discharged to home 3 days later. From there, another world of adventures and lessons learned was experienced as noted in the Transitions, Trust, and Triumph: A Daily Devotional for Caregivers guide. The guide includes resources, journaling opportunities to help chronicle experiences, and words of encouragement to keep the caregiver inspired, motivated, and reminded to take a moment to take care of themselves.

7.4

Food and Nutrition

Caregivers must be reminded to take care of themselves. While they may think about food, it is usually not their own diet for which they are concerned. They often worry because their loved one is not eating as they should or that they are spending so much time taking care of them that they are not preparing the meals that they should for their own family. They are often concerned about that favorite dish that their returning college student looks forward to or that special Sunday meal that their spouse desires. In the meantime, they eat on the run. As they spend time considering the eating needs of others, caregivers should also be encouraged to consider their own diet to ensure that they are consuming enough nutrients to keep them going. Meals that are nutritious but quick such as vegetable juices, protein bars, nuts, fresh fruit, and plenty of water are very important. Caregivers can be encouraged to look for quick snacks while on the run and clinicians may advise some of the following tips from the US Department of Agriculture (National Institutes of Health, National Heart, Lung and Blood Institute n.d.): • Toss sliced apples, berries, bananas, or wholegrain cereal on top of fat-free or low-fat yogurt. • Put a slice of fat-free or low-fat cheese on top of whole-grain crackers. • Make a whole-wheat pita pocket with hummus, lettuce, tomato, and cucumber. • Pop some fat-free or low-fat popcorn. • Microwave or toast a soft whole-grain tortilla with fat-free or low-fat cheese and sliced peppers and mushrooms to make a mini-burrito or quesadilla. • Drink fat-free or low-fat chocolate milk (blend it with a banana or strawberries and some ice for a smoothie). Caregivers should also consider soliciting the help of others or respite services that may occasionally allow them to enjoy a lunch or evening meal out while others sit with their loved one.

7.5 Special Considerations for Caregivers of Patients with Cancer

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As they move from thinking about physical food, they must also think about emotional food to keep their minds and bodies centered. Caregivers must lean on that source that gives them strength. For some, it may be religion, and for others, it may be meditation, massage, or other sources of retreat. Caregivers must find a source of strength that grounds them and brings moments of stress release in their otherwise hectic schedules. Early-morning or late-evening trips to the gym, a quick walk, or finding an exercise routine that they can use at home is essential.

7.5

 pecial Considerations for Caregivers of Patients S with Cancer

The National Institutes of Health, National Cancer Center, notes that more than 1.7 million new cases of cancer are expected to be diagnosed in the USA in 2019. Many patients diagnosed with cancer will eventually require support from a family caregiver. Family caregivers provide a complex array of support tasks that extend across physical, psychological, spiritual, and emotional domains. Enlisting the cooperation of family caregivers and including them as the unit of care from the outset are considered critical ingredients to effective cancer management (National Institutes of Health, National Cancer Institute 2019). The “NIH Support for Caregivers” references that caregivers are often expected to learn new illness-related terminology, enter the new treatment setting with the cancer patient, and participate actively in treatment decision-making. For all these reasons, caregivers experience a complex array of powerful emotions that may equal or surpass those experienced by the patient during diagnosis and treatment. They note that interventions for the caregiver include the following: • • • • •

Education and information Counseling and psychotherapy Home care services for the cancer patient Hospice care for the cancer patient Holding family meetings (a tool for communicating medical information, delineating the goals of care, and facilitating decision-making in cancer treatment) • Psychoeducation When interacting with the caregiver, clinicians will have to consider: • The type of information the patient wishes for them to discuss with their caregiver • How to communicate the treatment plan and expected outcomes, complications, and mitigation strategies, including the potential for increased attention to psychosocial needs, fatigue, anxiety, hopelessness, nausea, vomiting, and other potential effects of cancer therapy • How to weigh risks and benefits of treatments including helping families work through decisions about alternative or experimental therapies that may have been suggested to them by someone outside of the therapy team

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• How and when to discuss the need for hospice care or end-of-life decisions • Recognition of the potential financial burden that the patient, family, and caregiver may experience due to missing work, transportation needs, and cost of medications • The possibility of increased isolation for both the patient and caregiver • Cultural influences related to beliefs about illness, seeking help, and expressions of pain

7.6

 pecial Considerations for Caregivers of Patients S with Alzheimer’s Disease

Alzheimer’s is a progressive mental deterioration that can occur due to generalized degeneration of the brain. Alzheimer’s is the most common cause of dementia, a general term for memory loss and other cognitive abilities severe enough to interfere with daily life. Alzheimer’s disease accounts for 60–80% of dementia cases. Alzheimer’s is a progressive disease where dementia symptoms gradually worsen over a number of years. In its early stages, memory loss is mild, but with late-stage Alzheimer’s individuals lose the ability to carry on a conversation and respond to their environment. Alzheimer’s is the sixth leading cause of death in the USA (Alzheimer’s Association n.d.) and seventh worldwide (World Atlas 2015) when combined with other dementia diseases. Caregivers for patients with Alzheimer’s will be called upon for a journey that can take a toll on their own well-being if clinicians and others do not coach them on how to cope with the responsibility. The National Institute of Health, National Institute on Aging (NIA), has developed a compressive guide for those caring for persons with Alzheimer’s entitled “Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging.” (National Institutes of Health, National Institute on Aging 2019) Clinicians can use this tool to help recommend the following considerations for caregivers in this situation: • • • •

Learn about Alzheimer’s to help you cope with challenges. Plan how to care for someone with Alzheimer’s to make things easier. Create a safe home for the person with Alzheimer’s. Find the right place for the person with Alzheimer’s if he/she can no longer live at home. • Learn about medicines used for people with Alzheimer’s. • Find out how to cope with late-stage Alzheimer’s. The caregiver must also be reminded that taking care of themselves is one of the most important things they can do as a caregiver. The NIA offers the following which clinician can use to help guide the caregiver: • Ask for help when you need it. • Join a caregiver’s support group.

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Take breaks each day. Spend time with friends. Keep up with your hobbies and interests. Eat healthy foods. Get exercise as often as you can. See your doctor on a regular basis. Keep your health, legal, and financial information up to date.

7.7

Summary

Clinicians must remember to offer a word of encouragement to a caregiver, lend a helping hand, or just ask them how they are doing. It will go a long way to helping them in the special and wonderful journey of caregiving. It is important that they seek a balance between caregiving and their own life. Resources such as respite services are often so important to family caregivers. Respite care allows caregivers a break from their caregiving duties, so they can attend to their own needs, whether it is to focus on their own health or to pursue other interests.

References Moody-Williams J. Transitions, trust and triumph: a daily devotional for caregivers. Bloomington: WestBow Press; 2012. U.S. Department of Labor. Unpaid eldercare in the United States. Data from the American Time Use Survey. 2017. https://www.bls.gov/news.release/elcare.nr0.htm. Accessed 19 May 2019. U.S. Department of Labor Statistic 2015–2016. Number and percent of U.S. population who were eldercare providers. n.d.. https://www.bls.gov/news.release/elcare.t01.htm. American Association of Retired People (AARP). Prepare to care. n.d.. https://www.aarp.org/ content/dam/aarp/home-and-family/caregiving/2012-10/PrepareToCare-Guide-FINAL.pdf. Accessed 16 May 2019. National Institutes of Health, National Heart, Lung and Blood Institute. Making healthier food choices. n.d.. https://www.nhlbi.nih.gov/health/educational/wecan/downloads/tip_choices.pdf. Accessed 16 May 2019. National Institutes of Health, National Cancer Institute. Family caregivers in cancer: roles and challenges (PDQ). March 2019. https://www.cancer.gov/about-cancer/coping/family-friends/ family-caregivers-hp-pdq. Alzheimer’s Association. What is Alzheimer’s? n.d.. https://www.alz.org/alzheimers-dementia/ what-is-alzheimers. Accessed 16 May 2019. World Atlas. Top ten leading causes of death in the world. 2015. https://www.worldatlas.com/ articles/top-ten-leading-causes-of-death-in-the-world.html. Accessed 16 May 2019. National Institutes of Health, National Institute on Aging. Caring for a person with Alzheimer’s disease your easy-to-use guide from the National Institute on Aging. January 2017. https://order. nia.nih.gov/sites/default/files/2017-07/Caring_for_person_with_AD_508_0.pdf. Accessed 16 May 2019.

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Careers, Education, and Certifications in Patient and Family Engagement

8.1

Careers in Patient and Family Engagement

Many organizations are recognizing the value of patient and family engagement in health care and are hiring people with the appropriate skills and temperament for positions of this nature. The positions come with many different names and are in both hospitals and other healthcare settings, quality organizations, product developers, and additional settings. The following information is a conglomeration of various job postings from several settings. It is not reflective of any one specific position but provides a view into what employers are searching for and skills needed now and in the future. The term Director is used in most of the following descriptions for illustrative purposes; however, the positions could be at the level of Vice President, Director, Manager, Analyst, or Coordinator.

8.2

 irector of Patient Experience or Patient Engagement D in a Healthcare Setting

8.2.1 Common Titles There are many different terms used to describe the position that is responsible for integrating the concepts of patient and family engagement throughout an organization. A few titles currently in use include: • • • • •

Director of Patient and Family Engagement Patient Experience Officer Patient and Family Advocate Consumer Experience Analyst Vice President of Person-Center Care Coordinator

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8.2.2 Reporting Relationships The patient and family engagement professional sits in various levels of an organization and may have many members on a team. For example, the patient and family engagement professional may report to any of the following: • • • • •

President or Chief Executive Officer Chief Customer Experience Officer Vice President of Quality Improvement and Clinical Services Chief Performance Improvement Officer Chief Medical/Clinician/Nursing Officer

8.2.3 Desired Characteristic Organizations are generally seeking a leader that understands what it means to put the patient at the center of everything that is done from patient care to policy development. They are looking for passionate, innovative, empathetic, creative, and caring people that can help to build an organizational culture and standards of care that leads to excellent clinical outcomes, improves patient engagement and participation in the healthcare experience, increases employee engagement, and benefits the general health of the population they serve in the community. The professional is expected to help to create a culture that recognizes the importance of the patient, family, and caregiver’s values and goals for health care. These strategies must address all aspects of the experience, including clinical care, physical environment, as well as emotional, cultural, and spiritual needs of patients, families, and employees.

8.2.4 Example Position Description Prospective employers may describe the position using similar statements such as the following: • Serves as a key leader in support of developing and executing the strategic and tactical plan for providing a consistently exceptional world-class customer experience for patients, families, and guests throughout the organization: This includes partnering with the C-suite teams to be an accountable consultant executing on all patient experience initiatives and plans, developing plans to overcome issues, and helping to put accountability in place at all levels in the organization. • Leads and facilitates the development and deployment of clinician and operational initiatives to integrate patient, family, and visitor’s needs into clinical practice in collaboration with organizational leaders. Combines clinical knowledge and standards of patient and family engagement to promote better engagement with the clinical and operational staff including medical, nursing, imaging,

8.2 Director of Patient Experience or Patient Engagement in a Healthcare Setting

• • •

• •

• •

•

•

•

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diagnostic, therapist, business, and all other clinical and operational personnel. Identifies specific communication skills needed for effective, empathetic communication with consumers. Provides consultation and project management expertise to leadership and staff on priority issues affecting consumer experience and related activities. Utilizes data-driven approaches for continuous improvement, problem resolution, and best practices to align with the customer experience strategy and tactics. Ensures strong communication and linkage to support system service excellence work by utilizing systems tools, plans, initiatives, training, top tactics, and other available resources to avoid duplication of effort while communicating to service excellence leadership any issues/gaps that need to be addressed. Promotes the use and implementation of technology in the workplace to streamline operations, facilitate communications, and optimize work processes. Oversees the operations of consumer experience data reporting and internal education about consumer satisfaction surveys. Analyzes data to monitor real-time feedback trends, prioritize efforts, and launch improvement. Ensures local accountability for satisfaction scores. Determines the appropriate means to capture the voice of the consumer. Employs human-centered design in helping to improve the customer’s journey through the healthcare system and improve their ability to navigate through the continuum and achieve the desired outcomes. Responsible for planning, organizing, directing, and controlling projects, programs, education, and change initiatives to achieve a human-centered mission design to incorporate the patient’s voice in the development of policies and programs such as bedside rounding, family councils, and patient advisory committees. Provide oversight and coordination to ensure collaboration and support. Develops and implements key front-facing customer operations, service ambassadors, concern/grievance management, patient advocacy programs, and customer experience consultant functions. Supports the management of community relations, outreach events, and advocacy groups. Promotes financial stewardship and patient excellence for the entities supported. Develops and recommends the budgets for the area managed. Manages activities to assure that financial goals are met. Coordinates the assignment of tasks and helps resolve technical and operational problems. Evaluates the impact of solutions to ensure that goals are achieved. Encourages and supports diverse views and approaches, creating an environment of professionalism, respect, tolerance, civility, and acceptance toward all employees, patients, families, and visitors.

8.2.5 Example of Educational Requirements Bachelor’s Degree. Masters Preferred Preferred Field of Study: Nursing, Health Services Administration, Business Administration, Social Sciences, or a related field.

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Training or certification in any one or all of the following preferred: Patient Engagement, Human-Centered Design, Hospitality/Customer Service, Continuous Improvement, Organizational Effectiveness, and/or Change Management.

8.2.6 Example Experience Five years’ experience in an organization focused on improving quality, safety, or service/customer experience/patient relations is required. Clinical experience is highly preferred. Experience in implementing high-quality services and programs in a healthcare environment is required. There should be a proven track record of partnering with medical staff to achieve desired patient experience outcomes. Advanced knowledge of process improvement principles and practices is required. The ability to organize, prioritize, and multitask workload in a fast-paced environment is needed. There should be the ability to proficiently use written language in composing a variety of presentations, policies, procedures, and other applicable communication pieces.

8.3

Other Patient and Family Engagement Positions

While the above requirements are representative of the requirements for a patient and family engagement professional in a healthcare system, there are different types of healthcare organizations that employ patient engagement professionals such as integrated care management entities, quality improvement entities, research organizations, pharmaceutical companies, and clinical associations and societies. Following are a few additional example requirements that may be requested depending on the type of organization: • The Director of Patient Engagement is responsible for the data science strategy, infrastructure, and execution of patient recruitment and engagement among a network of research practices. This role manages the outreach team to identify, recruit, and engage with potential research participants that meet the requirement of the clinical trial. The Director ensures that the participant’s needs are understood and that they feel valued and heard throughout the research study. The Director establishes relationships with patient advocacy groups and serves as a liaison with community outreach events and referral networks. • The Director of Patient and Family Engagement is responsible for leading the development, implementation, and evaluation of work designed to engage and integrate the patient, family, and consumer perspectives in diverse initiatives across the span of the professional association. The Director will work with the members of the association to provide resources and sharing of best practices in patient and family engagement and will cultivate strategic partnerships with a diverse group of partners to achieve the strategic, financial, and quality goals of the organization. The Director will monitor the direction of patient and family

8.4 Complementary and Emerging Position Descriptions

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engagement as promoted by professional standards, clinical evidence, new legislation, and government programs. • The Patient Engagement Officer works closely with the global, regional, and commercial teams to ensure that strategies and activities are aligned and leveraged to support the pharmacy and therapeutics programs. The Officer engages with the pharmacy marketing and communications teams to support patient centricity and identifies, educates, builds, and leverages patient/caregiver and Patient Advocacy Organization relationships. The Officer also works with medical and legal colleagues to ensure that all activities meet internal and external standards and reflect country guidelines and regulations.

8.4

Complementary and Emerging Position Descriptions

Patient and family engagement is an integral component of an environment of continuous quality improvement and patient safety. Most healthcare organizations will have a Director of Quality Improvement, Chief Quality Officer, Patient Safety Officers, or some combination of the roles. As the healthcare system continues to transform from fee-for-service to value-based care, new positions are being developed, such as the Director of Value and Care Coordination. Many organizations will incorporate the role of patient and family engagement in one of these positions if they do not have a separate position. Regardless of whether the role of patient and family engagement is a part of the team or separate, it is imperative that the various roles coordinate and work together to create a world-class organization. Following is an example of the elements of the descriptions of several complementary roles.

8.4.1 Director of Quality Improvement The Director of Quality Improvement is an inspiring leader who continuously works to improve patient outcomes, eliminate preventable harm, and engage patients and families to achieve the organization’s mission. The Director supports the overall planning and direction of external reporting to achieve national leader performance in quality indicators across all entities to improve patient care outcomes, minimize financial risk related to pay-for-performance programs, and ensure the highest performance. The Director works collaboratively with the leadership team, clinical departments, and services to develop innovative measures to analyze and report on performance regarding the quality and safety of care. The Director leads the Quality Coordination Councils and presents the results of root cause analysis, rapid improvement activities, and results of the quality dashboards to the system leaders and the Board of Directors. The Director will also maintain expertise in hospital and healthcare-­related patient safety, quality and performance improvement principles, and practices, as well as regulatory and statutory requirements for quality improvement and patient safety in health care.

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8.4.2 Director of Patient Safety The Patient Safety Director promotes a culture of safety to eliminate avoidable harm. The Director manages and coordinates an organization-wide risk and patient safety program and monitors the areas of organizational risk and compliance as it relates to patient safety. The Director is responsible for fostering a culture of safe practices to reduce error and improve patient outcomes. The Director assesses compliance with national patient safety goals and other patient safety initiatives and implements policies/programs/education to maximize patient safety. The Director emphasizes proactive harm prevention for patients, visitors, and staff through the development and implementation of programs, policies, and activities.

8.4.3 Director of Value and Care Integration The Director of Value and Care Integration leads, directs, and oversees the system-­ wide value and incentive processes across the practice with a focus on cost, quality, and patient outcome data to identify opportunities. The Director creates a value and incentive team and is responsible for ensuring that the clinical staff understands the various value-based care models emerging from government and commercial payers across a broad spectrum of populations. The Director analyzes the multiple models to determine the most appropriate fit for organizational participation, balancing models that are patient centered and outcome oriented with models that also offer an opportunity for shared savings for a return on investment. The Director promotes quality improvement and patient and family engagement along with cost efficiency by providing data from multiple sources including claims, electronic health records, patient-reported data, and other sources, developing continuous quality improvement opportunities and monitoring for results.

8.5

Educational Programs and Certifications

8.5.1 N  ational Association of Healthcare Quality: Certified Professional in Healthcare Quality® (CPHQ) According to the National Association of Healthcare Quality, the goal of the CPHQ is to promote excellence and professionalism by documenting individual performance as measured against a predetermined level of knowledge about quality. CPHQ candidates and certificants span the continuum of care and are at various levels in their healthcare quality career (National Association for Healthcare Quality 2019). The CPHQ incorporates the body of knowledge in the profession, including: • Strategic and operational roles in management and leadership • Information management, including design and data collection, measurement and analytics, and communication

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• Performance/quality measurement and improvement, including planning, implementation, and evaluation, and training • Strategic and operational tasks in patient safety CPHQ defines a professional in healthcare quality as having experience in managing or conducting activities in one or more of the following areas of expertise in healthcare quality: • • • • • • •

Performance and process improvement Care coordination Population health Data analytics, measurement, and analysis Patient safety Risk management Compliance with standards and regulations

In performing these functions, the healthcare quality professional applies information management, general administrative, and program development and evaluation skills. The exam is administered several times a year within the USA and internationally four times a year.

8.5.2 A  merican Board of Quality Assurance and Utilization Review Physicians (AMQAURB): Health Care Quality and Management (HCQM) Certification According to the ABQUARP, the HCQM Certification demonstrates that ABQAURP Diplomates have the practical knowledge and the tools that can reduce medical errors, ensure patient safety, and eliminate waste and unnecessary services while avoiding potentially harmful delays in care. Certification demonstrates to internal and external entities that a group practice or hospital is accountable (American Board of Quality Assurance and Utilization Review Physicians (AMQAURB) n.d.). ABQAURP notes that those that acquire the ABQAURP HCQM Board Certification demonstrate: • Professional and personal commitment to the healthcare profession • Enhancement of skills and expertise to manage in today’s complex healthcare environment • Endorsement of skills exceeding the minimum requirements of a specific position • Willingness to benefit from educational accomplishments and increase knowledge

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8.5.3 Certified Professional in Patient Safety™ (CPPS) CPPS is earned by professionals who have demonstrated a high level of proficiency in the core standards of patient safety (Institute for Healthcare Quality Improvement 2019). This credential is awarded through a thorough examination covering five patient safety domains: • • • • •

Culture Leadership Patient safety risks and solutions Measuring and improving performance Systems thinking, and design/human factors

Candidates for the CPPS credential are those who include patient safety practices as an integral component of current or future professional responsibilities. Candidates must also possess academic and professional experience at one of the following levels: • Baccalaureate degree or higher plus 3 years of experience (includes time spent in clinical rotations and residency programs) in a healthcare setting or with a provider of services to the healthcare industry • Associate degree or equivalent plus 5 years of experience (includes time spent in clinical rotations) in a healthcare setting or with a provider of services to the healthcare industry

8.5.4 A  merican Society for Health Care Risk Management (ASHRM): Patient Safety Certificate Program According to the ASHRM, the Patient Safety Certificate Program is designed to assist healthcare risk management, and patient safety professionals apply key patient safety concepts to support improved patient care and outcomes. Participants review patient safety concepts and learn to apply them to effect positive change in their organization effectively. The certificate program is designed in a “blended learning” approach, with attendees beginning with the program with an online component before the in-person learning (American Society for Health Care Risk Management (ASHRM) n.d.).

8.6

Summary

The need for qualified professionals is great as the demand for patient-centered care grows in health care. Understanding the professional qualifications needed for the position helps the professional to prepare to meet the current and future employment needs. Most importantly, the voice of the patient must be included in whatever role is developed by a healthcare system.

References

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References American Board of Quality Assurance and Utilization Review Physicians (AMQAURB). Health Care Quality and Management (HCQM) Certification. n.d.. https://www.abqaurp.org/ ABQMain/Certification.aspx. Accessed 9 June 2019. American Society for Health Care Risk Management (ASHRM). Patient Safety Certificate Program. n.d.. http://www.ashrm.org/education/ps_cert.dhtml. Accessed 9 June 2019. Institute for Healthcare Quality Improvement. Certified Professional in Patient Safety™ (CPPS). http://www.ihi.org/education/cpps-certified-professional-in-patient-safety/Pages/default.aspx. Accessed 9 June 2019. National Association for Healthcare Quality. About the Certified in Healthcare Quality Professional. 2019. https://nahq.org/certification/certified-professional-healthcare-quality. Accessed 9 Apr 2019.

 ppendix A: Roadmap for Patient and Family A Engagement in Healthcare Practice and Research: Actions You Can Do Today

Carman KL, Dardess P, Maurer ME, Workman T, Ganachari D, Pathak-Sen E. A Roadmap for Patient and Family Engagement in Healthcare Practice and Research. (Prepared by the American Institutes for Research under a grant from the Gordon and Betty Moore Foundation, Dominick Frosch, Project Officer and Fellow; Susan Baade, Program Officer.) Gordon and Betty Moore Foundation: Palo Alto, CA; September 2014. www.patientfamilyengagement.org.

Five Simple Actions You Can Do Today The Roadmap for Patient and Family Engagement in Healthcare Practice and Research outlines eight change strategies to support and advance engagement. These change strategies and the accompanying tactics are intended to ignite change, but it is also important to think about the simple things we can all do right now that will make a difference. The complete roadmap can be found at https://www.air.org/sites/default/files/ Roadmap-Patient-Family-Engagement.pdf But there are some things you can do right away. That is where the five simple actions come in. Whether you are a patient, family member, clinician, organizational leader, policymaker, insurer, employer, or researcher, the following are five things you can start doing right now. They are tangible, discrete actions that can make a difference.

What Can Patients and Families Do? 1. Give feedback on your experiences. Complete any surveys you get from your healthcare providers that ask about your experiences at your most recent visit. Write a letter to your local clinic or hospital about the care you received or tell your doctors and nurses what went well and what could be improved. If you experience a problem with the quality or safety of care you get, inform your healthcare provider and check back about what they do to resolve it.

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Appendix A: Roadmap for Patient and Family Engagement in Healthcare Practice…

2. Look for information to help you understand your health and health condition. Look for information online or at your library to help you understand your health condition, symptoms, issues involved in your care, and treatment choices. Write down any questions or concerns to share with your healthcare team. To find trustworthy information, ask your healthcare provider about recommended websites or apps. 3. Get ready for your next healthcare visit. Write down important health information, such as medicines you are taking and current health symptoms. Think about what is most important for your healthcare team to know about you, your current problem, and your health history. Create a concise list of questions and let your provider know at the beginning of your visit that you would like to discuss these questions. 4. Keep track of and organize your medical information. Keep a record of your medical care for your files. Ask if your healthcare provider uses electronic health records and whether there is an electronic patient portal. If so, use it to access your healthcare information and look at your health records. After a medical appointment, ask for a copy of the visit summary and tests that were done. 5. Contact your local clinic or hospital and volunteer to be a patient and family advisor. Advisors share their experiences and provide input to help healthcare organizations provide better care. If your local hospital or clinic doesn’t work with patient and family advisors, ask them to consider doing so. What all these actions have in common is that they drive toward partnership— where patients and families participate at all levels in health care to help achieve our common goals of better patient experiences of care, better population health, and lower costs.

What Can Clinicians Do? 1. Welcome input and feedback from patients and families. Form a patient and family advisory council or office-based council. Invite patients and families to share their stories and experiences of care at your next staff meeting. Partner with patient and family advisors to improve current policies, practices, and procedures. 2. Maximize the potential of your patient portal. Encourage patients to use the portal and include records of their office visits as well as lab tests. Encourage patients to communicate with you by email to provide brief and timely responses to patient questions. 3. Use teach-back and other proven communication techniques. Use teach-back methods to ensure that patients understand the information you are communicating, for example, by asking “Can you tell me when and how you are going to take this medication?” Ask open-ended questions that help you elicit information and understand the patient’s values, goals, and beliefs, for example: “What is important to you as we think about your care plan?” “What is your goal for your care?” “What questions do you have?”

What Can Healthcare Leaders and Policymakers Do?

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4. Ask patients what is important to them so that you can understand whether your recommendations are a good match with their values and goals. Share your thinking about recommendations for care or treatment you present to patients or families, helping them weigh the risks and benefits to make an informed decision. Let patients know that you want to hear their view and any questions or concerns they have about your recommendations. 5. Contact your professional societies and encourage them to include patient and family representatives as part of the process when setting clinical recommendations or guidelines.

What Can Provider or Delivery Organizations Do? 1. Give patients real-time access to their medical records so they can be informed and engaged in their care and partners in helping to catch and prevent potential mistakes. 2. Establish family presence policies that welcome family members to be with patients at all times. Encourage families to attend appointments and be part of the healthcare team. Identify and address any barriers to family presence, such as making space for families in exam or hospital rooms. 3. Get patient and family input. Invite patients and families to provide input and feedback about how you can improve the care you deliver to patients. If you’ve never worked with advisors before, start by asking for input on informational materials, help interpreting results of patient experience surveys, and input on policies and care processes. Create feedback loops to let patients and families who have provided input know how this input was used. Work toward co-­creating materials, policies, and processes and partnering with patients and families on quality and safety committees. 4. Organize a staff education session or grand rounds on patient and family engagement. Educate clinicians and staff about what engagement is, the benefits of patient and family partnership, and ways they can promote and support patient and family engagement. Invite patients and families to share their stories with staff during this session. 5. Make sure that patients and families know whom to contact if they have questions or concerns about the quality or safety of care they have received. Include the patient advocate’s contact information on your organization’s website. Provide patients with simple navigational tools, such as a chart of who is who in your practice or organization and whom to call for different concerns.

What Can Healthcare Leaders and Policymakers Do? 1. Lead by example and be a visible presence. Make a direct connection with patients and families and ask them for feedback about their experiences. For example, talk to patients and families while they are waiting for healthcare

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appointments. Conduct leader rounds with patients in the hospital. If you are a policymaker, talk to patients and families in the community—even if it is just at the local grocery store—about their healthcare experiences. 2. Include goals related to patient and family engagement as key components of your short- and long-term strategic plans. Identify specific areas of opportunity with measurable objectives and strategies for achieving your goals. 3. Add patients and families to boards and committees, giving them support, training, and mentoring to partner effectively. Make patient and family engagement a standing agenda item at every board meeting. 4. Invite patients and families to participate in conferences and meetings as keynote speakers or participants on panel presentations. 5. Make patient and family engagement an agenda item at your next meeting to explore clinician, staff, and healthcare leader perspectives about patient and family engagement. Work toward partnering with patients and families to determine policies and procedures for your organization.

What Can Insurers Do? 1. Provide tools that members can use to easily understand their healthcare choices. Provide information about out-of-pocket costs at the time of service. Make sure that members know whom to contact at the health plan if they have problems with their care. 2. Target outreach and information to high-priority populations with ongoing healthcare needs. Serve as a source of support for people with chronic conditions or other ongoing healthcare needs, helping them navigate the health system and get the care they need. Provide information and support to help individuals with chronic conditions engage in better self-management of their health. 3. Establish a member advisory council to get input from members on informational materials, member billing and reimbursement processes, explanation of benefit statements, or online tools. 4. Publicly report patient experiences and clinical outcomes important to patients and families. Publicly report outcomes important to patients and families to help them make more informed decisions about their care and foster transparency within the healthcare system. 5. Give bonus points on contracts to organizations that engage patients and families in organizational design and governance.

What Can Employers Do? 1. Give employees clear information about healthcare quality so that they can make informed decisions, such as deciding where to receive care for “shoppable” conditions like joint replacement surgery.

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2. Help employees understand health insurance and healthcare costs. Share information about what employers pay, what employees pay, and how employees’ actions relate to overall healthcare costs. 3. Actively seek contracts with health plans that reimburse or reward patient and family engagement efforts, such as partnering with patients and families in organizational design or tracking quality metrics related to patient-reported outcomes and patient experiences of care. 4. Create an employee advisory council to partner with employees in decision-­ making about health plan benefits and coverage. 5. Join an employer coalition or business group on health to exchange ideas with other employers about patient and family engagement and improving the quality and safety of care. If you are already a member of an employer coalition, encourage the group to focus on patient and family engagement as an important component of efforts to improve quality and safety and lower healthcare costs.

What Can Researchers Do? 1. Co-create research proposals with patient and families and work with them on designing and implementing studies that answer the questions that matter most to them. 2. Conduct research to identify behaviors that constitute and support patient and family engagement—by patients, families, clinicians, administrators, and other health professionals—within various healthcare settings. 3. Partner with patients and families to design process and outcome measures to identify outcomes of most interest to patients and families. 4. Build return-on-investment metrics related to outcomes, experiences of care, and costs into research on patient and family engagement efforts. 5. Look beyond the peer-reviewed literature for ways to disseminate results and information. Share results via blogs, consumer-friendly fact sheets, and social media.

 ppendix B: To Err Is Human: Building a Safer A Health System

Health care in the USA is not as safe as it should be—and can be. At least 44,000 people, and perhaps as many as 98,000 people, die in hospitals each year as a result of medical errors that could have been prevented, according to estimates from two major studies. Even using the lower estimate, preventable medical errors in hospitals exceed attributable deaths to such feared threats as motor vehicle wrecks, breast cancer, and AIDS. Medical errors can be defined as the failure of a planned action to be completed as intended or the use of a wrong plan to achieve an aim. Among the problems that commonly occur during the course of providing health care are adverse drug events and improper transfusions, surgical injuries and wrong-site surgery, suicides, restraint-related injuries or death, falls, burns, pressure ulcers, and mistaken patient identities. High error rates with serious consequences are most likely to occur in intensive care units, operating rooms, and emergency departments. Beyond their cost in human lives, preventable medical errors exact other significant tolls. They have been estimated to result in total costs (including the expense of additional care necessitated by the errors, lost income and household productivity, and disability) of between $17 billion and $29 billion per year in hospitals nationwide. Errors also are costly in terms of loss of trust in the healthcare system by patients and diminished satisfaction by both patients and health professionals. Patients who experience a long hospital stay or disability as a result of errors pay with physical and psychological discomfort. Health professionals pay with loss of morale and frustration at not being able to provide the best care possible. Society bears the cost of errors as well, in terms of lost worker productivity, reduced school attendance by children, and lower levels of population health status. A variety of factors have contributed to the nation’s epidemic of medical errors. One oft-cited problem arises from the decentralized and fragmented nature of the healthcare delivery system—or “nonsystem,” to some observers. When patients see multiple providers in different settings, none of whom has access to complete information, it becomes easier for things to go wrong. In addition, the processes by which health professionals are licensed and accredited have focused only limited attention on the prevention of medical errors, and even these minimal efforts have confronted resistance from some healthcare organizations and providers. Many providers also perceive the medical liability system as a serious impediment to © Springer Nature Switzerland AG 2020 J. Moody-Williams, A Journey towards Patient-Centered Healthcare Quality, https://doi.org/10.1007/978-3-030-26311-9

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systematic efforts to uncover and learn from errors. Exacerbating these problems, most third-party purchasers of healthcare provide little financial incentive for healthcare organizations and providers to improve safety and quality. Types of Errors

Diagnostic Error or delay in diagnosis Failure to employ indicated tests Use of outmoded tests or therapy Failure to act on results of monitoring or testing Treatment Error in the performance of an operation, procedure, or test Error in administering the treatment Error in the dose or method of using a drug Avoidable delay in treatment or in responding to an abnormal test Inappropriate (not indicated) care Preventive Failure to provide prophylactic treatment Inadequate monitoring or follow-up of treatment Others Failure of communication Equipment failure Other system failure Source: Leape, Lucian; Lawthers, Ann G.; Brennan, Troyen A., et  al. Preventing Medical Injury. Qual Rev Bull. 19(5):144–149, 1993. Healthcare System at Odds with Itself  The Quality of Health Care in America Committee of the Institute of Medicine (IOM) concluded that it is not acceptable for patients to be harmed by the healthcare system that is supposed to offer healing and comfort—a system that promises “First, do no harm.” Helping to remedy this problem is the goal of To Err is Human: Building a Safer Health System, the IOM Committee’s first report. In this report, issued in November 1999, the committee lays out a comprehensive strategy by which government, healthcare providers, industry, and consumers can reduce preventable medical errors. Concluding that the know-how already exists to prevent many of these mistakes, the report sets as a minimum goal a 50% reduction in errors over the next 5 years. In its recommendations for reaching this goal, the committee strikes a balance between regulatory and market-based initiatives, and between the roles of professionals and organizations. One of the report’s main conclusions is that the majority of medical errors do not result from individual recklessness or actions of a particular group—this is not a “bad apple” problem. More commonly, errors are caused by faulty systems,

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processes, and conditions that lead people to make mistakes or fail to prevent them. For example, stocking patient care units in hospitals with certain full-strength drugs, even though they are toxic unless diluted, has resulted in deadly mistakes. Thus, mistakes can best be prevented by designing the health system at all levels to make it safer—to make it harder for people to do something wrong and easier for them to do it right. Of course, this does not mean that individuals can be careless. People still must be vigilant and held responsible for their actions. But when an error occurs, blaming an individual does little to make the system safer and prevent someone else from committing the same error.

Strategy for Improvement To achieve a better safety record, the report recommends a four-tiered approach: • Establishing a national focus to create leadership, research, tools, and protocols to enhance the knowledge base about safety Health care is a decade or more behind many other high-risk industries in its attention to ensuring basic safety. This is due, in part, to the lack of a single designated government agency devoted to improving and monitoring safety throughout the healthcare delivery system. Therefore, Congress should create a Center for Patient Safety that would set national safety goals and track progress in meeting them; develop a research agenda; define prototype safety systems; develop, disseminate, and evaluate tools for identifying and analyzing errors; develop methods for educating consumers about patient safety; and recommend additional improvements as needed. Funding for the center should be adequate and secure, starting with $30 million to $35 million per year and growing over time to at least $100 million annually— modest investments relative to the consequences of errors and to the resources devoted to other public safety issues. The center should be housed within the Agency for Healthcare Research and Quality (AHRQ), which already is involved in a broad range of quality and safety issues, and has established the infrastructure and experience to fund research, education, and coordinating activities. • Identifying and learning from errors by developing a nationwide public mandatory reporting system and by encouraging healthcare organizations and practitioners to develop and participate in voluntary reporting systems Under the mandatory reporting system, state governments will be required to collect standardized information about adverse medical events that result in death and serious harm. Hospitals should be required to begin reporting first, and eventually reporting should be required by all healthcare organizations. This system will ensure a response to specific reports of serious injury, hold healthcare organizations and providers accountable for maintaining safety, provide incentives to organizations to implement internal safety systems that reduce the likelihood of errors occurring, and respond to the public’s right to know about patient

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safety. Currently, about a third of the states have mandatory reporting requirements. Voluntary reporting systems will provide an important complement to the mandatory system. Such systems can focus on a much broader set of errors, mainly those that do no or minimal harm, and help detect system weaknesses that can be fixed before the occurrence of serious harm, thereby providing rich information to healthcare organizations in support of their quality improvement efforts. To foster participation in voluntary systems, Congress should enact laws to protect the confidentiality of certain information collected. Without such legislation, healthcare organizations and providers may be discouraged from participating in voluntary reporting systems out of worry that the information they provide might ultimately be subpoenaed and used in lawsuits. • Raising performance standards and expectations for improvements in safety through the actions of oversight organizations, professional groups, and group purchasers of health care Setting and enforcing explicit performance standards for patient safety through regulatory and related mechanisms, such as licensing, certification, and accreditation, can define minimum performance levels for health professionals, the organizations in which they work, and the tools (drugs and devices) they use to care for patients. The process of developing and adopting standards also helps to form expectations for safety among providers and consumers. Standards and expectations are not only set through regulations, however. The values and norms set by the health professions influence the practice, training, and education for providers. Thus, professional societies should become leaders in encouraging and demanding improvements in patient safety, by such actions as setting their own performance standards, convening and communicating with members about safety, incorporating attention to patient safety in training programs, and collaborating across disciplines. The actions of large purchasers of health care and healthcare insurance, as well as actions by individual consumers, can also affect the behaviors of healthcare organizations. Public and private purchasers, such as businesses buying insurance for their employees, must make safety a prime concern in their contracting decisions. Doing so will create financial incentives for healthcare organizations and providers to make needed changes to ensure patient safety. • Implementing safety systems in healthcare organizations to ensure safe practices at the delivery level Healthcare organizations must develop a “culture of safety” such that their workforce and processes are focused on improving the reliability and safety of care for patients. Safety should be an explicit organizational goal that is demonstrated by strong leadership on the part of clinicians, executives, and governing bodies. This will mean incorporating a variety of well-understood safety principles, such as designing jobs and working conditions for safety; standardizing and simplifying equipment, supplies, and processes; and enabling care providers to avoid reliance on memory. Systems for continuously monitoring patient safety must also be created and adequately funded.

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The medication process provides an example where implementing better systems will yield better human performance. Medication errors now occur frequently in hospitals, yet many hospitals are not making use of known systems for improving safety, such as automated medication order entry systems, nor are they actively exploring new safety systems. Patients themselves also could provide a major safety check in most hospitals, clinics, and practice. They should know which medications they are taking, their appearance, and their side effects, and they should notify their doctors of medication discrepancies and the occurrence of side effects.

Progress Underway The response to the IOM report was swift and positive, within both government and the private sector. Almost immediately, the Clinton administration issued an executive order instructing government agencies that conduct or oversee healthcare programs to implement proven techniques for reducing medical errors, and creating a task force to find new strategies for reducing errors. Congress soon launched a series of hearings on patient safety, and in December 2000 it appropriated $50 million to the Agency for Healthcare Research and Quality to support a variety of efforts targeted at reducing medical errors. The AHRQ already has made major progress in developing and implementing an action plan. Efforts underway include: • Developing and testing new technologies to reduce medical errors • Conducting large-scale demonstration projects to test safety interventions and error-reporting strategies • Supporting new and established multidisciplinary teams of researchers and healthcare facilities and organizations, located in geographically diverse locations, that will further determine the causes of medical errors and develop new knowledge that will aid in the work of the demonstration projects • Supporting projects aimed at achieving a better understanding of how the environment in which care is provided affects the ability of providers to improve safety • Funding researchers and organizations to develop, demonstrate, and evaluate new approaches to improving provider education in order to reduce errors Casting its net even more broadly, the AHRQ has produced a booklet of practical tips on what individual consumers can do to improve the quality of healthcare services they receive. The booklet focuses on key choices that individuals and their families face, such as choosing doctors, hospitals, and treatments, and it stresses the importance of individuals taking an active role in selecting and evaluating their care. (The booklet is available on the organization’s website at www. ahrq.gov.)

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In efforts focused at the state level, during the past year the National Academy for State Health Policy (NASHP) convened leaders from both the executive and legislative branches of the states to discuss approaches to improving patient safety. The NASHP also helped lead an initiative to better understand how states with mandatory hospital error-reporting requirements administer and enforce their programs. (A report on this initiative is available on the organization’s website at www.nashp. org). In addition, the Agency for Healthcare Research and Quality has contracted with the National Quality Forum to produce a list of so-called never events that states might use as the basis of a mandatory reporting system. Among activities in the private sector, the Leapfrog Group, an association of private and public sector group purchasers, unveiled a market-based strategy to improve safety and quality, including encouraging the use of computerized physician-­order entry, evidence-based hospital referrals, and use of ICUs staffed by physicians credentialed in critical care medicine. Professional groups within the healthcare community also have been active. As but one example, the Council on Graduate Medical Education (COGME) and the National Advisory Council on Nurse Education and Practice (NACNEP) held a joint meeting on “Collaborative Education Models to Ensure Patient Safety.” Participants addressed such issues as the effect of the relationships between physicians and nurses on patient safety, impact of physician-nurse collaboration on systems designed to protect patient safety, and educational programs to ensure interdisciplinary collaboration to further patient safety. (A report on the meeting is available on the COGME’s website at www.cogme.org.)

Pulling Together Although no single activity can offer a total solution for dealing with medical errors, the combination of activities proposed in To Err Is Human offers a roadmap toward a safer health system. With adequate leadership, attention, and resources, improvements can be made. It may be part of human nature to err, but it is also part of human nature to create solutions, find better alternatives, and meet the challenges ahead. For More Information... Copies of To Err Is Human: Building a Safer Health System are available for sale from the National Academy Press; call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP home page at www.nap.edu. The full text of this report is available at http://www.nap.edu/books/0309068371/ html/ Support for this project was provided by the National Research Council and the Commonwealth Fund. The views presented in this report are those of the Institute of Medicine Committee on the Quality of Health Care in America and are not necessarily those of the funding agencies. The Institute of Medicine is a private, nonprofit organization that provides health policy advice under a congressional charter granted to the National Academy of

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Sciences. For more information about the Institute of Medicine, visit the IOM home page at www.iom.edu. Copyright ©2000 by the National Academy of Sciences. All rights reserved. Permission is granted to reproduce this document in its entirety, with no additions or alterations

COMMITTEE ON QUALITY OF HEALTH CARE IN AMERICA WILLIAM C.  RICHARDSON (Chair), President and CEO, W.K.  Kellogg Foundation, Battle Creek, MI DONALD M.  BERWICK, President and CEO, Institute for Healthcare Improvement, Boston J. CRIS BISGARD, Director, Health Services, Delta Air Lines, Inc., Atlanta LONNIE R. BRISTOW, Past President, American Medical Association, Walnut Creek, CA CHARLES R.  BUCK, Program Leader, Health Care Quality and Strategy Initiatives, General Electric Company, Fairfield, CT CHRISTINE K. CASSEL, Professor and Chairman, Department of Geriatrics and Adult Development, Mount Sinai Medical Center, New York City MARK R. CHASSIN, Professor and Chairman, Department of Health Policy, The Mount Sinai Medical Center, New York City MOLLY JOEL COYE, Vice President and Director, West Coast Office, The Lewin Group, San Francisco DON E.  DETMER, Dennis Gillings Professor of Health Management, University of Cambridge, UK JEROME H.  GROSSMAN, Chairman and CEO, Lion Gate Management, LLC, Boston BRENT JAMES, Executive Director, Intermountain Health Care, Institute for Health Care Delivery Research, Salt Lake City, UT DAVID McK.  LAWRENCE, Chairman and CEO, Kaiser Foundation Health Plan, Inc., Oakland, CA LUCIAN LEAPE, Adjunct Professor, Harvard School of Public Health ARTHUR LEVIN, Director, Center for Medical Consumers, New York City RHONDA ROBINSON-BEALE, Executive Medical Director, Managed Care Management and Clinical Programs, Blue Cross Blue Shield of Michigan, Southfield JOSEPH E. SCHERGER, Associate Dean for Clinical Affairs, University of California at Irvine College of Medicine ARTHUR SOUTHAM, Partner, 2C Solutions, Northridge, CA MARY WAKEFIELD, Director, Center for Health Policy and Ethics, George Mason University GAIL L. WARDEN, President and CEO, Henry Ford Health System, Detroit

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Study Staff JANET M. CORRIGAN, Director, Division of Health Care Services, Director, Quality of Health Care in America Project MOLLA S. DONALDSON, Project Codirector LINDA T. KOHN, Project Codirector TRACY McKAY, Research Assistant KELLY C. PIKE, Senior Project Assistant Auxiliary Staff MIKE EDINGTON, Managing Editor KAY HARRIS, Financial Advisor SUZANNE MILLER, Senior Project Assistant Copy Editor FLORENCE POILLON

 ppendix C: Crossing the Quality Chasm: A A New Health System for the Twenty-First Century

The US healthcare delivery system does not provide consistent, high-quality medical care to all people. Americans should be able to count on receiving care that meets their needs and is based on the best scientific knowledge—yet there is strong evidence that this frequently is not the case. Healthcare harms patients too frequently and routinely fails to deliver its potential benefits. Indeed, between the health care that we now have and the health care that we could have lies not just a gap, but a chasm. A number of factors have combined to create this chasm. Medical science and technology have advanced at an unprecedented rate during the past half-century. In tandem has come growing complexity of health care, which today is characterized by more to know, more to do, more to manage, more to watch, and more people involved than ever before. Faced with such rapid changes, the nation’s healthcare delivery system has fallen far short in its ability to translate knowledge into practice and to apply new technology safely and appropriately. And if the system cannot consistently deliver today’s science and technology, it is even less prepared to respond to the extraordinary advances that surely will emerge during the coming decades. The public’s healthcare needs have changed as well. Americans are living longer, due at least in part to advances in medical science and technology, and with this aging population comes an increase in the incidence and prevalence of chronic conditions. Such conditions, including heart disease, diabetes, and asthma, are now the leading causes of illness, disability, and death. But today’s health system remains overly devoted to dealing with acute, episodic care needs. There is a dearth of clinical programs with the multidisciplinary infrastructure required to provide the full complement of services needed by people with common chronic conditions. The healthcare delivery system also is poorly organized to meet the challenges at hand. The delivery of care often is overly complex and uncoordinated, requiring steps and patient “handoffs” that slow down care and decrease rather than improve safety. These cumbersome processes waste resources; leave unaccountable voids in coverage; lead to loss of information; and fail to build on the strengths of all health professionals involved to ensure that care is appropriate, timely, and safe. Organizational problems are particularly apparent regarding chronic conditions.

© Springer Nature Switzerland AG 2020 J. Moody-Williams, A Journey towards Patient-Centered Healthcare Quality, https://doi.org/10.1007/978-3-030-26311-9

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The fact that more than 40% of people with chronic conditions have more than one such condition argues strongly for more sophisticated mechanisms to coordinate care. Yet healthcare organizations, hospitals, and physician groups typically operate as separate “silos,” acting without the benefit of complete information about the patient’s condition, medical history, services provided in other settings, or medications provided by other clinicians. CARE SYSTEM

Supportive payment and regulatory environment

Organizations that facilitate the work of patientcentered teams

High performing patient-centered teams

Outcomes: • Safe • Effective • Efficient • Personalized • Timely • Equitable

REDESIGN IMPERATIVES: SIX CHALLENGES • • • • •

Reengineered care processes Effective use of information technologies Knowledge and skills management Development of effective teams Coordination of care across patient-conditions, services, sites of care over time Making change possible.

Strategy for Reinventing the System Bringing state-of-the-art care to all Americans in every community will require a fundamental, sweeping redesign of the entire health system, according to a report by the Institute of Medicine (IOM), an arm of the National Academy of Sciences. Crossing the Quality Chasm: A New Health System for the 21st Century, prepared by the IOM’s Committee on the Quality of Health Care in America and released in March 2001, concludes that merely making incremental improvements in current systems of care will not suffice.

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The committee already has spoken to one urgent care problem—patient safety— in a 1999 report titled To Err is Human: Building a Safer Health System. Concluding that tens of thousands of Americans die each year as a result of preventable mistakes in their care, the report lays out a comprehensive strategy by which government, healthcare providers, industry, and consumers can reduce medical errors. Crossing the Quality Chasm focuses more broadly on how the health system can be reinvented to foster innovation and improve the delivery of care. Toward this goal, the committee presents a comprehensive strategy and action plan for the coming decade.

Six Aims for Improvement Advances must begin with all healthcare constituencies—health professionals, federal and state policymakers, public and private purchasers of care, regulators, organization managers and governing boards, and consumers—committing to a national statement of purpose for the healthcare system as a whole. In making this commitment, the parties would accept as their explicit purpose “to continually reduce the burden of illness, injury, and disability, and to improve the health and functioning of the people of the United States.” The parties also would adopt a shared vision of six specific aims for improvement. These aims are built around the core need for health care to be: • Safe: avoiding injuries to patients from the care that is intended to help them. • Effective: providing services based on scientific knowledge to all who could benefit, and refraining from providing services to those not likely to benefit. • Patient centered: providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions. • Timely: reducing waits and sometimes harmful delays for both those who receive and those who give care. • Efficient: avoiding waste, including waste of equipment, supplies, ideas, and energy. • Equitable: providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status. A healthcare system that achieves major gains in these six areas would be far better at meeting patient needs. Patients would experience care that is safer, more reliable, more responsive to their needs, more integrated, and more available, and they could count on receiving the full array of preventive, acute, and chronic services that are likely to prove beneficial. Clinicians and other health workers also would benefit through their increased satisfaction at being better able to do their jobs and thereby bring improved health, greater longevity, less pain and suffering, and increased personal productivity to those who receive their care.

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Ten Rules for Redesign To help in achieving these improvement aims, the committee deemed that it would be neither useful nor possible to specify a blueprint for twenty-first-century healthcare delivery systems. Imagination abounds at all levels, and all promising routes for innovation should be encouraged. At the same time, the committee formulated a set of ten simple rules, or general principles, to inform efforts to redesign the health system. These rules are as follows: 1. Care is based on continuous healing relationships. Patients should receive care whenever they need it and in many forms, not just face-to-face visits. This implies that the healthcare system must be responsive at all times, and access to care should be provided over the Internet, by telephone, and by other means in addition to in-person visits. 2. Care is customized according to patient needs and values. The system should be designed to meet the most common types of needs, but should have the capability to respond to individual patient choices and preferences. 3. The patient is the source of control. Patients should be given the necessary information and opportunity to exercise the degree of control they choose over healthcare decisions that affect them. The system should be able to accommodate differences in patient preferences and encourage shared decision-making. 4. Knowledge is shared and information flows freely. Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information. 5. Decision-making is evidence based. Patients should receive care based on the best available scientific knowledge. Care should not vary illogically from clinician to clinician or from place to place. 6. Safety is a system property. Patients should be safe from injury caused by the care system. Reducing risk and ensuring safety require greater attention to systems that help prevent and mitigate errors. 7. Transparency is necessary. The system should make available to patients and their families information that enables them to make informed decisions when selecting a health plan, hospital, or clinical practice, or when choosing among alternative treatments. This should include information describing the system’s performance on safety, evidence-based practice, and patient satisfaction. 8. Needs are anticipated. The system should anticipate patient needs, rather than simply react to events. 9. Waste is continuously decreased. The system should not waste resources or patient time. 10. Cooperation among clinicians is a priority. Clinicians and institutions should actively collaborate and communicate to ensure an appropriate exchange of information and coordination of care.

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Taking the First Steps To initiate the process of change, Congress should establish a Health Care Quality Innovation Fund—roughly $1 billion for use over 3–5  years to help produce a public-­domain portfolio of programs, tools, and technologies of widespread applicability, and to help communicate the need for rapid and significant change throughout the health system. Some of the projects funded should be targeted at achieving the six aims of improvement. The committee also calls for immediate attention on developing care processes for the common health conditions, most of them chronic, that afflict great numbers of people. The federal Agency for Healthcare Research and Quality (AHRQ) should identify 15 or more common priority conditions. (The agency has requested guidance from the IOM on selection of these conditions, and the Institute expected to issue its report in September 2002.) The AHRQ then should work with various stakeholders in the health community to develop strategies and action plans to improve care for each of these priority conditions over a 5-year period.

Changing the Environment Redesigning the healthcare delivery system also will require changing the structures and processes of the environment in which health professionals and organizations function. Such changes need to occur in four main areas: • Applying evidence to healthcare delivery. Scientific knowledge about best care is not applied systematically or expeditiously to clinical practice. It now takes an average of 17  years for new knowledge generated by randomized controlled trails to be incorporated into practice, and even then application is highly uneven. The committee therefore recommends that the Department of Health and Human Services establish a comprehensive program aimed at making scientific evidence more useful and more accessible to clinicians and patients. It is critical that leadership from the private sector, both professional and other healthcare leaders and consumer representatives, be involved in all aspects of this effort to ensure its applicability and acceptability to clinicians and patients. The infrastructure developed through this public-private partnership should focus initially on priority conditions. Efforts should include analysis and synthesis of the medical evidence, delineation of specific practice guidelines, identification of best practices in the design of care processes, dissemination of the evidence and guidelines to the professional communities and the general public, development of support tools to help clinicians and patients in applying evidence and making decisions, establishment of goals for improvement in care processes and outcomes, and development of measures for assessing quality of care. • Using information technology. Information technology, including the Internet, holds enormous potential for transforming the healthcare delivery system, which today remains relatively untouched by the revolution that has swept nearly every

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other aspect of society. Central to many information technology applications is the automation of patient-specific clinical information. Such information typically is dispersed in a collection of paper records, which often are poorly organized, illegible, and not easy to retrieve, making it nearly impossible to manage various illnesses, especially chronic conditions, that require frequent monitoring and ongoing patient support. Many patients also could have their needs met more quickly and at a lower cost if they could communicate with health professionals through email. In addition, the use of automated systems for ordering medications can reduce errors in prescribing and dosing drugs, and computerized reminders can help both patients and clinicians identify needed services. The challenges of applying information technology should not be underestimated, however. Health care is undoubtedly one of the most, if not the most, complex sectors of the economy. Sizable capital investments and multiyear commitments to building systems will be needed. Widespread adoption of many information technology applications also will require behavioral adaptations on the part of large numbers of clinicians, organizations, and patients. Thus, the committee calls for a nationwide commitment of all stakeholders to building an information infrastructure to support healthcare delivery, consumer health, quality measurement and improvement, public accountability, clinical and health service research, and clinical education. This commitment should lead to the elimination of most handwritten clinical data by the end of the decade. • Aligning payment policies with quality improvement. Although payment is not the only factor that influences provider and patient behavior, it is an important one. The committee calls for all purchasers, both public and private, to carefully reexamine their payment policies to remove barriers that impede quality improvement and build in stronger incentives for quality enhancement. Clinicians should be adequately compensated for taking good care of all types of patients, neither gaining nor losing financially for caring for sicker patients or those with more complicated conditions. Payment methods also should provide an opportunity for providers to share in the benefits of quality improvement, provide an opportunity for consumers and purchasers to recognize quality differences in health care and direct their decisions accordingly, align financial incentives with the implementation of care processes based on best practices and achievement of better patient outcomes, and enable providers to coordinate care for patients across settings and over time. To assist purchasers in their redesign of payment policies, the federal government, with input from the private sector, should develop a program to identify, pilot test, and evaluate various options for better aligning payment methods with quality improvement goals. Examples of possible means of achieving this end include blended methods of payment designed to counter the disadvantages of one payment method with the advantages of another, multiyear contracts, payment modifications to encourage use of electronic interaction among clinicians and between clinicians and patients, and bundled payments for priority conditions.

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• Preparing the workforce. Health care is not just another service industry. Its fundamental nature is characterized by people taking care of other people in times of need and stress. Stable, trusting relationships between a patient and the people providing care can be critical to healing or managing an illness. Therefore, the importance of adequately preparing the workforce to make a smooth transition into a thoroughly revamped healthcare system cannot be underestimated. Three approaches can be taken to support the workforce in this transition. One approach is to redesign the way health professionals are trained to emphasize the six aims for improvement, which will mean placing more stress on teaching evidence-­based practice and providing more opportunities for interdisciplinary training. Second is to modify the ways in which health professionals are regulated and accredited to facilitate needed changes in care delivery. Third is to use the liability system to support changes in care delivery while preserving its role in ensuring accountability among health professionals and organizations. All of these approaches likely will prove valuable, but key questions remain about each. The federal government and professional associations need to study these approaches to better ascertain how they can best contribute to ensuring the strong workforce that will be at the center of the healthcare system of the twenty-first century.

No Better Time Now is the right time to begin work on reinventing the nation’s healthcare delivery system. Technological advances are making it possible to accomplish things today that were impossible only a few years ago. Health professionals and organizations, policymakers, and patients are becoming all too painfully aware of the shortcomings of the nation’s current system and of the importance of finding radically new and better approaches to meeting the healthcare needs of all Americans. Although Crossing the Quality Chasm does not offer a simple prescription—there is none—it does provide a vision of what is possible and the path that can be taken. It will not be an easy road, but it will be most worthwhile.

For More Information... Copies of Crossing the Quality Chasm: A New Health System for the 21st Century are available for sale from the National Academy Press; call (800) 624-­ 6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP home page at www.nap.edu. The full text of this report is available at http://www. nap.edu/books/0309072808/html/ Support for this project was provided by the Institute of Medicine; the National Research Council; the Robert Wood Johnson Foundation; the California Health Care Foundation; the Commonwealth Fund; and the Department of Health and Human Services’ Health Care Finance Administration, Public Health Service, and

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Agency for Healthcare Research and Quality. The views presented in this report are those of the Institute of Medicine Committee on the Quality of Health Care in America and are not necessarily those of the funding agencies. The Institute of Medicine is a private, nonprofit organization that provides health policy advice under a congressional charter granted to the National Academy of Sciences. For more information about the Institute of Medicine, visit the IOM home page at www.iom.edu. Copyright ©2000 by the National Academy of Sciences. All rights reserved. Permission is granted to reproduce this document in its entirety, with no additions or alterations

COMMITTEE ON QUALITY OF HEALTH CARE IN AMERICA WILLIAM C.  RICHARDSON (Chair), President and CEO, W.K.  Kellogg Foundation, Battle Creek, MI DONALD M.  BERWICK, President and CEO, Institute for Healthcare Improvement, Boston, MA J. CRIS BISGARD, Director, Health Services, Delta Air Lines, Inc., Atlanta, GA LONNIE R.  BRISTOW, Former President, American Medical Association, Walnut Creek, CA CHARLES R.  BUCK, Program Leader, Health Care Quality and Strategy Initiatives, General Electric Company, Fairfield, CT CHRISTINE K. CASSEL, Professor and Chairman, Department of Geriatrics and Adult Development, The Mount Sinai School of Medicine, New York, NY MARK R. CHASSIN, Professor and Chairman, Department of Health Policy, The Mount Sinai School of Medicine, New York, NY MOLLY JOEL COYE, Senior Fellow, Institute for the Future, and President, Health Technology Center, San Francisco, CA DON E.  DETMER, Dennis Gillings Professor of Health Management, University of Cambridge, UK JEROME H.  GROSSMAN, Chairman and CEO, Lion Gate Management Corporation, Boston, MA BRENT JAMES, Executive Director, Intermountain Health Care Institute for Health Care Delivery Research, Salt Lake City, UT DAVID McK.  LAWRENCE, Chairman and CEO, Kaiser Foundation Health Plan, Inc., Oakland, CA LUCIAN L.  LEAPE, Adjunct Professor, Harvard School of Public Health, Boston, MA ARTHUR LEVIN, Director, Center for Medical Consumers, New York, NY RHONDA ROBINSON-BEALE, Executive Medical Director, Managed Care Management and Clinical Programs, Blue Cross Blue Shield of Michigan, Southfield JOSEPH E.  SCHERGER, Associate Dean for Primary Care, University of California, Irvine College of Medicine

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ARTHUR SOUTHAM, President and CEO, Health Systems Design, Oakland, CA MARY WAKEFIELD, Director, Center for Health Policy, Research, and Ethics, George Mason University, Fairfax, VA GAIL L. WARDEN, President and CEO, Henry Ford Health System, Detroit, MI Study Staff JANET M. CORRIGAN, Director, Quality of Health Care in America Project Director, Board on Health Care Services MOLLA S. DONALDSON, Project Codirector LINDA T. KOHN, Project Codirector SHARI K. MAGUIRE, Research Assistant KELLY C. PIKE, Senior Project Assistant Auxiliary Staff MIKE EDINGTON, Managing Editor JENNIFER CANGCO, Financial Advisor Consultant RONA BRIER, Brier Associates, Inc.