TY - JOUR
T1 - Sharing my health data
T2 - a survey of data sharing preferences of healthy individuals
AU - Bell, Elizabeth A.
AU - Ohno-Machado, Lucila
AU - Grando, Maria
PY - 2014
Y1 - 2014
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=84964314971&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84964314971&partnerID=8YFLogxK
M3 - Article
C2 - 25954442
AN - SCOPUS:84964314971
SN - 1559-4076
VL - 2014
SP - 1699
EP - 1708
JO - AMIA ... Annual Symposium proceedings / AMIA Symposium. AMIA Symposium
JF - AMIA ... Annual Symposium proceedings / AMIA Symposium. AMIA Symposium
ER -