Return of Research Results to Study Participants – Uncharted and Untested

JAMA
August 14, 2018, Vol 320, No. 6, Pages 519-612
http://jama.jamanetwork.com/issue.aspx

JAMA
August 7, 2018, Vol 320, No. 5, Pages 419-516
Return of Research Results to Study Participants – Uncharted and Untested
Charlene A. Wong, MD, MSHP; Adrian F. Hernandez, MD, MHS; Robert M. Califf, MD
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.