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

TitleSharing my health data: a survey of data sharing preferences of healthy individuals.
Publication TypeJournal Article
Year of Publication2014
AuthorsBell, EA, Ohno-Machado, L, M Grando, A
JournalAMIA Annu Symp Proc
Volume2014
Pagination1699-708
Date Published2014
ISSN1942-597X
iDASH CategoryPatient Centered Research
Abstract<p>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.</p>
Alternate JournalAMIA Annu Symp Proc
PubMed ID25954442
PubMed Central IDPMC4419941
Grant List1U54HL108460 / HL / NHLBI NIH HHS / United States