Citizens, research ethics committee members and researchers’ attitude
toward information and consent for the secondary use of health data:
Implications for research within learning health systems
Abstract
A provincial survey was conducted to assess citizens, research ethics
committee (REC) members and researchers’ attitude toward information and
consent for the secondary use of health data for research within a
learning health system (LHS). The results show that: 1) reuse of health
data for research to advance knowledge and improve care is values by all
parties; 2) consent regarding health data use for research is
fundamental particularly to citizens, even when the data are
de-identified; 3) a secure website to support the information and
consent processes was appreciated by all. Researchers were more
comfortable with the use of de-identified health data for research
without informing nor seeking consent from people than citizen and REC
member respondents. This survey was part of a larger project that aims
at exploring public perspectives on alternate approaches to the current
consent models in Quebec to take into consideration the unique features
of LHS. The revised consent model will need to ensure that citizens are
given the opportunity to be better informed about incoming researches
with their health data and have their say, when possible, in the use of
their data.