title: 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.
authors.affiliation: University of California San Diego Division of Biomedical Informatics ; University of Minnesota School of Public Health.
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Bell
authors.affiliation: University of California San Diego Division of Biomedical Informatics.
authors.forename: Lucila
authors.initials: L
authors.lastname: Ohno-Machado
authors.affiliation: Arizona State University Department of Biomedical Informatics.
authors.forename: M Adela
authors.initials: MA
authors.lastname: Grando
mesh_terms: D035843:Biomedical Research; D002755:Choice Behavior; D003219:Confidentiality; D003625:Data Collection; D006801:Humans; D033181:Information Dissemination; D008499:Medical Records; D057240:Patient Preference