Consumer Health Informatics Enabling Digital Health for Everyone

"An engaging introduction to an exciting multidisciplinary field where positive impact depends less on technology than on understanding and responding to human motivations, specific information needs, and life constraints." -- Betsy L. Humphreys, former Deputy Director, National Library of Medicine This is a book for people who want to design or promote information technology that helps people be more active and informed participants in their healthcare. Topics include patient portals, wearable devices, apps, websites, smart homes, and online communities focused on health. Consumer Healthcare Informatics: Enabling Digital Health for Everyoneeducates readers in the core concepts of consumer health informatics: participatory healthcare; health and e-health literacy; user-centered design; information retrieval and trusted information resources; and the ethical dimensions of health information and communication technologies. It presents the current state of knowledge and recent developments in the field of consumer health informatics. The discussions address tailoring information to key user groups, including patients, consumers, caregivers, parents, children and young adults, and older adults. For example, apps are considered as not just a rich consumer technology with the promise of empowered personal data management and connectedness to community and healthcare providers, but also a domain rife with concerns for effectiveness, privacy, and security, requiring both designer and user to engage in critical thinking around their choices. This book’s unique contribution to the field is its focus on the consumer and patient in the context of their everyday life outside the clinical setting. Discussion of tools and technologies is grounded in this perspective and in a context of real-world use and its implications for design. There is an emphasis on empowerment through participatory and people-centered care.

Part I Foundations Chapter 1 Individuals’ Opportunities and Challenges in the Era of Participatory Healthcare Alla Keselman Chapter 2 Consumer Health Informatics as a Field Catherine Arnott Smith Chapter 3 Health Literacy and Other Competencies: The Skills Consumers Need in Order to Be Effective in the Digital Health Information Environment Alla Keselman Chapter 4 Online Databases to Support Consumer Health Informatics Catherine Arnott Smith Chapter 5 Trusted Information Sources Catherine Arnott Smith Chapter 6 People Engaging with Health Information Technology Catherine Arnott Smith and Alla Keselman Part II Tools Chapter 7 PHRs and Patient Portals Catherine Arnott Smith Chapter 8 There Is an App for That: The Universe and the Promise of Consumer Health Mobile Apps Alla Keselman Chapter 9 Smart Medical Homes and Their Potential to Support Independent Living Alla Keselman Chapter 10 Patient Communities Catherine Arnott Smith Chapter 11 The Ethics of Consumer Health Informatics Catherine Arnott Smith and Alla Keselman Index

Catherine Arnott Smith, PhD, is a Professor in the Information School and a Discovery Fellow, Virtual Environments Group, Wisconsin Institutes for Discovery, University of Wisconsin-Madison. She is a former medical librarian who moved into biomedical informatics for her PhD through the Center (now Department) of Biomedical Informatics at the University of Pittsburgh (2002), where she was a National Library of Medicine medical informatics predoctoral trainee. Her research centers on consumer interactions with clinical information systems, mediated through text, in settings that range from patient portals to public libraries to disabilities support centers. Alla Keselman, PhD, is a Senior Social Science Analyst in the Office of Engagement and Training, National Library of Medicine, Bethesda, MD. She holds a PhD in human cognition and learning and an MA in biomedical informatics from Columbia University. Dr. Keselman coordinates NLM efforts in evaluating the impact of its health information outreach and community engagement programs. Her research interests include lay understanding of complex health concepts, scientific literacy, and the provision of health information outside clinical settings. She has done work on bringing health and environment-related topics to the science classroom and conducted research into the role of libraries in providing health information to the public.