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Individuals track a variety of their personal health data (PHD) via a growing number of wearable devices and smartphone apps. More and more PHD is also being captured passively as people use social networks, shop on-line, search the Internet, or do any number of activities that leave “digital footprints.” Almost all of these forms of PHD are gathered outside of the mainstream of traditional health care, public health or health research.
Although self-tracking of PHD could provide better measures of everyday behavior and lifestyle, health researchers still largely rely on traditional sources of health data such as those collected in clinical trials, sifting through electronic medical records, or conducting periodic surveys. Unfortunately, collecting PHD also introduces new challenges including data access, ownership, and privacy. With support from the Robert Wood Johnson Foundation, the Health Data Exploration (HDE) project is facilitating research to better understand the barriers to using PHD in research. The HDE project is also creating a network that includes individuals who track their own PHD, the companies that market self-tracking devices, apps or services and aggregate and manage that data, and the scientists who might use the data to answer research questions.
Dr. Patrick will discuss the HDE project and explore some of the issues related to data ownership and individual privacy as well as new approaches to understanding public health that PHD might provide.
Kevin Patrick, MD, MS is Professor of Family Medicine and Public Health at the University of California, San Diego and Director of the Center for Wireless and Population Health Systems at the Qualcomm Institute/Calit2. He is Director of the Health Data Exploration project of the Robert Wood Johnson Foundation (RWJF). He served as Editor-in-Chief of the American Journal of Preventive Medicine for 20 years (1994-2013), and has served on the Secretary’s Council for Health Promotion and Disease Prevention of the U.S. Department of Health and Human Services and the Armed Forces Epidemiology Board. His research, supported by the NIH, NSF, CDC and RWJF explores how to use mobile, home and social technologies to measure and improve the health of individuals and populations.