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Connecting Researchers to Patient- and Person-Generated Data

Kevin Patrick (University of California, San Diego)
Salon G-F
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A variety of health-relevant parameters can now be easily captured via wearable devices, smartphones and other tools that may yield insights about personal and population health. Sensors on these devices are collecting ever-larger streams of data that have never been collected before on individuals – across the lifespan, throughout the course of health and illness and in geospatial context. Yet the fields of behavioral, social, clinical and public health research still largely rely on traditional sources of health data such as electronic medical records, clinical trials funded by pharma or the NIH, and public health data from periodic surveys or reports from surveillance systems.

There may be considerable scientific value in making new forms of health data available to researchers in medicine, public health and the social and behavioral sciences. Moreover, wider availability of these data might spark a new cadre of “citizen scientists” who can add to what traditional health researchers do. But for a variety of reasons it is not obvious how to make these data available for research. Private companies may have little interest in research that does not support their commercial interests; they may lack the expertise or resources to conduct research; or they might face technical barriers that thwart making these data useable for research.

This new RWJF initiative is exploring how to bridge the “worlds” of health researchers, the set of mostly private and often small technology companies that hold these data and individuals who may want to donate their own health or medical data. Issues addressed include whether there are unique scientific, methodological or ethical issues involved in such research; how to handle intellectual property of research findings; how and where these data intersect with other forms of medical and public health data; data quality; and privacy and confidentiality.

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Kevin Patrick

University of California, San Diego

Kevin Patrick, MD, MS is Professor of Family and Preventive Medicine at the University of California, San Diego, Editor-in-Chief of the American Journal of Preventive Medicine and Director of the Center for Wireless and Population Health Systems at the Qualcomm Institute at UCSD. His research explores how to use mobile and social technologies to measure and improve environmental exposures and health-related behaviors for individuals and across populations.

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