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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 deidentified; 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.
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https://hal.archives-ouvertes.fr/hal-03484161
Contributor : Adrien Barton Connect in order to contact the contributor
Submitted on : Thursday, December 16, 2021 - 8:16:39 PM
Last modification on : Monday, July 4, 2022 - 9:59:24 AM
Long-term archiving on: : Thursday, March 17, 2022 - 8:02:46 PM

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Annabelle Cumyn, Roxanne Dault, Adrien Barton, Anne-Marie Cloutier, Jean-François Ethier. 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. Journal of Empirical Research on Human Research Ethics, SAGE Publications (UK and US), 2021, 16 (3), pp.165-178. ⟨10.1177/1556264621992214⟩. ⟨hal-03484161⟩

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