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Consumer Informatics and Digital Health Margo Edmunds • Christopher Hass Erin Holve Editors 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 tech- nologies 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 determi- nants 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 physi- cians 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. v vi Foreword 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 informa- tion 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 impor- tance 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
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