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August 7, 2018

Return of Research Results to Study Participants: Uncharted and Untested

Author Affiliations
  • 1Department of Pediatrics, Duke University School of Medicine, and Duke-Margolis Center for Health Policy, Durham, North Carolina
  • 2Duke Clinical Research Institute, Duke University School of Medicine, Durham, North Carolina
  • 3Department of Cardiology, Duke University School of Medicine, Durham, North Carolina
  • 5Duke Forge, Duke University School of Medicine, Durham, North Carolina
  • 6Verily Life Sciences (Alphabet), South San Francisco, California
JAMA. 2018;320(5):435-436. doi:10.1001/jama.2018.7898

Research data may be of great utility to study participants and their clinicians in understanding and managing the health of patients who participate in research, depending on the clinical context and nature of results. In addition, increasing amounts of digital data are generated by commercial health products, such as accelerometers and smart watches, and in clinical care. With increasing digitization and data availability, researchers, clinicians, developers, and patients encounter the issue of how to consume, analyze, and make sense of those data. The return of individual results in the context of research studies provides a useful, structured environment to develop an empirical framework, and lessons learned may be applicable to other cases of health information consumerism.

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