Sharing my health data: a survey of data sharing preferences of healthy individuals

Abstract

We interviewed 70 healthy volunteers to understand their choices about how the information in their health record should be shared for research. Twenty-eight survey questions captured individual preferences of healthy volunteers. The results showed that respondents felt comfortable participating in research if they were given choices about which portions of their medical data would be shared, and with whom those data would be shared. Respondents indicated a strong preference towards controlling access to specific data (83%), and a large proportion (68%) indicated concern about the possibility of their data being used by for-profit entities. The results suggest that transparency in the process of sharing is an important factor in the decision to share clinical data for research.