Consumer Informatics and Digital Health Margo Edmunds • Christopher Hass Erin Holve Editors

Consumer Informatics and Digital Health Solutions for Health and Health Care Editors Margo Edmunds Christopher Hass Washington, DC, USA Boston, MA, USA

Erin Holve Takoma Park, MD, USA

ISBN 978-3-319-96904-6 ISBN 978-3-319-96906-0 (eBook) https://doi.org/10.1007/978-3-319-96906-0

Library of Congress Control Number: 2018957137

© Springer Nature Switzerland AG 2019 Chapter 11 is published with kind permission of © Elsevier Inc. 2017 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Foreword

This book exemplifies an exciting and opportunistic development toward improving human health, and it deserves your attention. In short, Consumer Informatics and Digital Health seeks to review the evidence base for consumer engagement and consumer informatics approaches; offer expert advice and also report on many examples of innovations using data analytics and digital health strategies in clinical, community-based, and home-based settings; and illustrate ways in which health systems are using informatics approaches to make a difference both in personal as well as population and community health. In addition to providing practical information grounded in computer science, telehealth, and the early days of mobile health, several authors offer their perspec- tives with respect to policy, ethical, and organizational dimensions of digital technologies and consumer engagement. Margo Edmunds and her co-editors and contributors demonstrate a commitment to creating a more informed, expert, consumer-centered workforce. Together, the chapters demonstrate the diverse disci- plines that must work together in teams to facilitate transformation in health care. Highly motivated consumers also can get value from the book by finding real-world examples of strategies to engage providers in shared decision-making regarding their own and their family members’ health. A review of some relevant history might offer readers additional insights into the fresh perspective amply demonstrated by the book’s editors and contributors, par- ticularly with respect to core concepts such as patient centeredness, social determinants of health, and health equity. In 1991, the Institute of Medicine released its report, The Computer-Based Patient Record: An Essential Technology for Health Care. One committee member, Morris Collen, argued effectively to the committee that the “new” record was not simply a computer-based version of the “old” paper medical record. The focus of this new record was not to be on medicine or physicians or nurses or other clinicians, but instead centered on the individual patient and, collectively, patient populations. Around the same time, Kerr White and Julia Connolly (1991) noted that the chasm between personal health and public health needed to be bridged by reorienting medical education to consider population health.

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Even earlier, in the 1960s and 1970s, Larry Weed, another early giant in the field of health-related informatics, spoke eloquently on the critical importance of listen- ing to the patient and constructing a problem list generated as much from the patient as from the caregivers, presaging the focus on patient-reported outcomes as well as social determinants of health. From Weed’s perspective, if the problem was trans- portation or food, it was a problem that deserved identification and attention (Weed 1975)—a perspective borne out by the current literature. When the Crossing the Quality Chasm report of the IOM appeared in 2001, equity made the list of needed attributes of quality health care systems. Ironically and regrettably, however, equity was listed last among the six attributes. Having been a member of the committee that produced the report, all one can say is that the ordering revealed a cruel irony of thinking at that time. Clearly, if equity isn’t the first consideration, no level of quality of care will help those who cannot access care. It is encouraging that Edmunds and her contributors seem to have taken that perspective to heart in Consumer Informatics and Digital Health and have addressed social and economic risk factors, health disparities, and health equity throughout the book. Moving forward to today, biomedical and health informatics continue to evolve at a rapid pace as the dimensions of the discipline both widen and deepen. Happily, the past two decades have shown explosive growth in the availability of and access to computer-based health records for health professionals, patients, and citizens. As health information and communications technology and platforms for health-related information and knowledge have improved dramatically, access of consumers to their own health care data is finally beginning to become a reality. Health information technology is now capable of collecting and sharing more detailed history between patients, caregivers, and providers. In addition, informatics enables us to discern individual and population-based patterns to better understand the impact of social determinants and strategies to promote health equity. After decades of knowing that “activated” users reduce personal suffering and help reform aspects of system underperformance leading to greater equity, quality, and safety at reduced cost, patients still have a residual and insufficient power dis- advantage when it comes to patient-centered care. Despite the efforts of consumer advocacy groups, the Institute of Medicine/National Academy of Medicine, and many others to enhance the policy and practice environment and dramatically enhance secure access to personal health information for clinical care and research, the acceptance of activated consumers lags far behind our early vision and even realistic expectations. The vision of transitioning from an excessively medical mindset to one with shared decision-making and a consideration of all the social determinants of illness and disease is most worthy. These contributors should be commended for their strong effort to promote the role of consumer informatics in this transition. The technology has arrived to facilitate the vision of equitable, patient-centered care envisioned by White, Connolly, Weed, and many others. As Thaler and Sunstein remind us, we now need policy to help “nudge” us toward health, wealth, and hap- piness. Consumer Informatics and Digital Health offers a vision of ways technology Foreword vii can support person-centered health that should spur us on toward this goal. We’ll know we’ve made progress when the nation understands and embraces the importance of health data generated by patients and health system records, and this pres- sure is coming from sectors of the population seeking better health status for all individuals and all communities.

Charlottesville, VA Don Eugene Detmer

References

Thaler, R. H., & Sunstein, C. R. (2009). Nudge. New York: Penguin. Weed, L. L. (1975). Your health care and how to manage it: Your health, your problems, your plans, your progress. PROMIS Laboratory, University of Vermont. Also see Kernisan, L. Medicine in Denial: What Larry Weed can teach us about patient empowerment. The health care blog, May 22, 2013. Available at: http://thehealthcareblog.com/blog/2013/05/22/ medicine-in-denial-what-larry-weed-can-teach-us-about-patient-empowerment/. White, K. & Connolly, J. (1991). The medical school’s mission and the population’s health. Annals of Internal Medicine, 115(12), 968–972. doi: 10.7326/0003-4819-115-12-968. Preface

When our editorial team first started planning this book in response to Springer’s invitation, we were exhilarated and daunted at the same time. Each of us has deep, diverse experience in health consumer technologies, mobile health, electronic health data, telehealth, informatics, and user experience. We had worked together before and were excited to bring our breadth of practical experience to the literature on consumer health informatics. At the same time, we were aware of the challenge of staying ahead of the curve given the fact that the digital health industry moves really fast; is often referred to as “the wild west;” and that the hype cycle can overwhelm promising health information technology. We knew it would be challenging to keep up with new developments in health care delivery while finding a way to contribute to a systematic evidence base for consumer-focused technology interventions. And we didn’t want the book to be out of date before it was even published! In response, we started by defining the audiences we most wanted to reach with Consumer Informatics and Digital Health: the next generation of people who want to design, test, implement, study, and use consumer-facing technologies in health and health care. Then we began reaching out to our colleagues and friends who are already part of this multi-sector ecosystem in some way, since so many are teaching, training, and mentoring the future workforce, and we asked them to write chapters. The book’s authors are based in academic institutions, think tanks, design firms, health systems, government, industry, and community-based and consumer settings. They are consumers, physicians, nurses, psychologists, data scientists, infor- maticians, designers, developers, and systems thinkers who share an interest in making health systems better for consumers, patients, their families, communities, and the professionals and citizens who work with them and on their behalf. The contributors are not armchair theorists; rather, they are actively engaged in a range of activities to design, develop, and implement consumer health informatics. We asked the authors to use a similar chapter structure to help organize their thoughts and to make the book easier to read in its entirety. We also invited them to think of their chapters as individual contributions that can stand apart from the rest of the book, while relating to the other chapters. One hallmark of the book is a

ix x Preface shared commitment to thinking through new areas of consumer health informatics in which more innovation and more evidence is needed. Some chapters are more focused on the evidence base, while others focus on practical issues in design and implementation, and some are more policy-oriented, but all include some thinking about the future evolution of their topic. Consumer Informatics and Digital Health presents and reviews organizational, technical, policy, design, and implementation issues associated with consumer- facing technologies such as websites, consumer portals, wearables, applications (apps), devices, and social media that are engaging people in health and health care experiences. The first part, Foundations of Consumer Informatics and Mobile Health, includes four chapters on consumer engagement, consumer informatics and digital health, using Health IT and data analytics to support health equity, and the trends and new directions for social media and online consumer tools. The second part, A New Ecosystem for Development and Design, has five chapters on the fundamentals of usability and user-centered design; health innovation trends; the importance of accessibility, especially for people with disabilities; practical suggestions for doing usability and utility testing; and motivational design and persuasive technology for behavior change. In the third part, on Consumer-Centered and Consumer-Generated Information, five chapters review the evidence base for consumer-generated information using visualization, digital tools for parents, mobile health, cancer informatics, and content strategy. Part IV, Policy and Regulatory Issues, has five chapters on value-based purchasing, community health, ethics, open science and data analytics, and how the National Health Service in the United Kingdom developed its digital health strategy. In our final chapter, we review some of the social, technical, and industry trends affecting the consumer informatics field and anticipate how they may play out in the future. We hope that readers will find that the book represents consumer health informatics as we see it—a rapidly evolving, multi-sector, team-oriented ecosystem. We also hope that the book may help to attract new talent in research, policy, clinical practice, population health, design, data science, and informatics, along with entre- preneurs, investors, and other stakeholders. We are honored and grateful to the authors for their contributions. We find them to be an unusually talented, committed, and creative group who shared information easily and were generous with their time. We also would like to thank the people who spoke with us on background, reviewed chapters, provided assistance with graphics, and helped in other ways. In alphabetical order, they are Lauren Adams, Thomas Blount, Patricia Flatley Brennan, Minhee Cho, Vineet Chopra, Catherine Craven, Stephanie Creel, Gregory Downing, DaShawn Groves, Hank Fanberg, Charles Cinque Fulwood, Sarah Greene, Tanya Hamburger, Laurie Beth Harris, Andrew Ibrahim, Beth Henry Johnson, Kyu Kang, Elizabeth Koechlein, Lisa Lang, Joy Lewis, Bernadette Loftus, Aileen McHugh, Lois Olinger, Anna Paladini, Douglas Peddicord, Gabbi Promoff, Preface xi

Catherine Pope, Jody Ranck, Gurvaneet Randhawa, Alison Rein, Karen Rheuban, Judith Phillips Rogers, Rebecca Roper, Raj Sabharwal, Claudia Schlosberg, Randi Siegel, Francine Simeon, Lisa Simpson, Lynn Sokler, Robin Strongin, Nicholas Sugai, Latoya Thomas, Fred Trotter, Reed Tuckson, Joe Weissfeld, Ann Waldo, and Sisi Wei. Support from AcademyHealth, Mad*Pow, and Kaiser Permanente is gratefully acknowledged. Finally, we also want to express deep appreciation to our editor at Springer, Janet Kim, who encouraged us every step of the way.

Washington, DC, USA Margo Edmunds Boston, MA, USA Christopher Hass Takoma Park, MD, USA Erin Holve Acknowledgment

Funding for editing this book is provided in part by AcademyHealth, AcademyHealth’s EDM Forum, Kaiser Permanente, and Mad*Pow.

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Part I Foundations of Consumer Informatics and Mobile Health 1 Promoting Consumer Engagement in Health and Health Care �� 3 Margo Edmunds 2 Introduction to Consumer Health Informatics and Digital Inclusion �� 25 M. Christopher Gibbons and Yahya Shaikh 3 Using Information Technology at Kaiser Permanente to Support Health Equity �� 43 Ronald L. Copeland, Winston F. Wong, Jason Jones, and Margo Edmunds 4 Healthcare Social Media for Consumer Informatics �� 61 Mandi Bishop

Part II A New Ecosystem for Development and Design 5 Understanding Usability and Human-Centered Design Principles �� 89 Christopher Hass and Margo Edmunds 6 A Practical Guide to Usability Testing �� 107 Christopher Hass 7 Designing for Inclusion: Ensuring Accessibility for People with Disabilities �� 125 Madeleine A. Rothberg 8 Understanding the Human-Centered Design Process �� 145 Christopher Hass

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9 Behavior Change Design: Toward a Vision of Motivational Technology �� 163 Dustin DiTommaso

Part III Consumer-Centered and Consumer-Generated Information 10 Consumer Engagement and Empowerment Through Visualization of Consumer-Generated Health Data �� 183 Adriana Arcia, Jacqueline A. Merrill, and Suzanne Bakken 11 Telemedicine and Pediatric Urgent Care: A Vision into the Future �� 205 Mordechai D. Raskas, Kari Gali, Dana Aronson Schinasi, and Shayan Vyas 12 Improving Self-Management and Care Coordination with Person-Generated Health Data and Mobile Health �� 221 Katherine K. Kim, Sakib Jalil, and Victoria Ngo 13 Behavioral Medicine and Informatics in the Cancer Community �� 245 Ellen Beckjord, David K. Ahern, and Bradford Hesse 14 Content Strategy: Writing for Health Consumers on the Web �� 275 Carolyn Petersen

Part IV Policy and Regulatory Issues 15 Leveraging Consumer Health IT to Incentivize Engagement and Shared Accountability in Value-Based Purchasing �� 289 Erin Holve 16 Co-Creating a Community Roadmap for Interoperability �� 305 Susan C. Hull and Margo Edmunds 17 Ethical Issues in Consumer Informatics and Online Content �� 327 John Wilbanks 18 Open Science and the Future of Data Analytics �� 337 Juergen Klenk, Philip R. O. Payne, Rasu Shrestha, and Margo Edmunds 19 Is It Possible for the NHS to Become Fully Digital? �� 359 Julian C. Tomlins

Part V Conclusion 20 Back to the Future: Emerging Technology, Social, and Cultural Trends Affecting Consumer Informatics �� 377 Margo Edmunds, Christopher Hass, and Erin Holve

Index �� 399 Contributors

David K. Ahern Digital Behavioral Health & Informatics Research Program, Brigham & Women’s Hospital, Boston, MA, USA Adriana Arcia School of Nursing, Columbia University, New York, NY, USA Suzanne Bakken School of Nursing and Department of Biomedical Informatics, Columbia University, New York, NY, USA Ellen Beckjord Insurance Services Division, University of Pittsburgh Medical Center, Pittsburgh, PA, USA Mandi Bishop Gartner, Jacksonville, FL, USA Ronald L. Copeland Kaiser Permanente, Oakland, CA, USA Dustin DiTommaso Mad*Pow, Boston, MA, USA Rhode Island School of Design, Providence, RI, USA Margo Edmunds AcademyHealth, Washington, DC, USA Kari Gali Express Care Online, Distance Health Cleveland Clinic, Cleveland, OH, USA Patient Safety Leadership Program, University of Illinois Chicago, Chicago, IL, USA M. Christopher Gibbons Johns Hopkins University School of Medicine and The Greystone Group, Inc., Washington, DC, USA Christopher Hass Boston, MA, USA Bradford Hesse Health Communication and Informatics Research Branch, National Cancer Institute, Bethesda, MD, USA Erin Holve Department of Health Care Finance, Government of the District of Columbia, Washington, DC, USA

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Susan C. Hull Gartner, Inc. Stamford, CT, USA Sakib Jalil University of California, Davis, Sacramento, CA, USA Jason Jones Kaiser Permanente, Oakland, CA, USA Katherine K. Kim University of California, Davis, Sacramento, CA, USA Juergen Klenk Deloitte Consulting LLP, Arlington, VA, USA Jacqueline A. Merrill School of Nursing and Department of Biomedical Informatics, Columbia University, New York, NY, USA Victoria Ngo University of California, Davis, Sacramento, CA, USA Philip R. O. Payne Informatics Institute and Division of General Medical Sciences, School of Medicine, Washington University, St. Louis, MO, USA Carolyn Petersen Mayo Clinic, Rochester, MN, USA Mordechai D. Raskas Division of Telemedicine and Clinical Informatics, PM Pediatrics, Greenbelt, MD, USA Madeleine A. Rothberg The Carl and Ruth Shapiro Family National Center for Accessible Media at WGBH Educational Foundation, Boston, MA, USA Dana Aronson Schinasi Division of Emergency Medicine, Emergency Care Connect, Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine, Evanston, IL, USA Yahya Shaikh Johns Hopkins University School of Medicine and The Greystone Group, Inc., Washington, DC, USA Rasu Shrestha UPMC and UPMC Enterprises, Pittsburgh, PA, USA Julian C. Tomlins Roche Products UK Ltd, London, UK Shayan Vyas Critical Care Medicine, Nemours Children’s Hospital, University of Central Florida, College of Medicine, Orlando, FL, USA John Wilbanks Sage Bionetworks, Washington, DC, USA Winston F. Wong Kaiser Permanente, Oakland, CA, USA About the Editors

Margo Edmunds, PhD is Vice President, Evidence Generation and Translation at AcademyHealth, where she oversees a portfolio of projects on information infra- structure, research translation, dissemination, and health communications. Her expertise includes informatics and communications technology policy, health information exchange, and web-based learning and communications tools.

Christopher Hass is a consulting UX strategist, presenter, and past president of UXPA International and its Boston Chapter. He is an expert on the subjects of human-centered design, accessibility, UX research, and the development of innova- tive products and services for a wide variety of commercial and government clients.

Erin Holve, PhD, MPH, MPP is Director, Health Care Reform and Innovation, Department of Health Care Finance, the Government of the District of Columbia. Previously, she was the Principal Investigator for the EDM Forum, a federally funded innovations collaborative, and led projects on comparative effectiveness research and patient-centered outcome research. She also managed online learning and professional development activities.

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