Exploring public concerns for sharing and governance of personal health information: a focus group study

OBJECTIVE: Researchers are increasingly collecting large amounts of deidentified data about individuals to address important health-related challenges and answer fundamental questions. Current US federal regulations permit researchers to use already collected and stored deidentified health-related data from a variety of sources without seeking consent from patients. The objective of this study was to investigate public views on the policies and processes institutions have in place for accessing, using, and sharing of data. MATERIALS AND METHODS: We conducted 5 focus groups with individuals living within a 20-mile radius of the local academic medical center. We also held a focus group with undergraduates at a local university. RESULTS: A total of 37 individuals participated, ages 18–76. Most participants were not surprised that researchers accessed and used deidentified personal information for research, and were supportive of this practice. Transparency was important. Participants wanted to know when their data were accessed, for what purpose, and by whom. Some wanted to have some control over the use of their data valuing the chance to opt-out. Finally, participants supported establishment of an advisory council or group with responsibility for deciding what data were used, who was accessing those data, and whether data could be shared. DISCUSSION AND CONCLUSIONS: The trust people have in their local institutions should be considered fragile, and institutions should not take that trust for granted. How institutions choose to govern patients’ data and what voices are included in decisions about use and access are critical to maintaining the trust of the public.