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Cumyn et al., 2021.pdf (584.41 kB)

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

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posted on 08.01.2021, 22:47 by Annabelle Cumyn, Roxanne Dault, Adrien Barton, Anne-Marie Cloutier, Jean-François Ethier
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.

Funding

Quebec SPOR Support Unit

History

Declaration of conflicts of interest

Annabelle Cumyn is REC Chair. However, the project was reviewed and approved by a separate REC. The authors declared no other potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Corresponding author email

jean-francois.ethier@usherbrooke.ca

Lead author country

Canada

Lead author job role

Higher Education Researcher

Lead author institution

Université de Sherbrooke

Human Participants

Yes

Ethics statement

This study was approved by the research ethics committee Éducation et Sciences Sociales - Université de Sherbrooke.

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