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. 2021 Jul;16(3):165-178.
doi: 10.1177/1556264621992214. Epub 2021 Mar 12.

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

Annabelle Cumyn  1   2 , Roxanne Dault  1   2   3 , Adrien Barton  1   4 , Anne-Marie Cloutier  1   2   3 , Jean-François Ethier  1   2   3
Affiliations

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

Annabelle Cumyn et al. J Empir Res Hum Res Ethics. 2021 Jul.

Abstract

A survey was conducted to assess citizens, research ethics committee members, and researchers' attitude toward information and consent for the secondary use of health data for research within learning health systems (LHSs). Results show that the reuse of health data for research to advance knowledge and improve care is valued by all parties; consent regarding health data reuse for research has fundamental importance particularly to citizens; and all respondents deemed important the existence of a secure website to support the information and consent processes. This survey was part of a larger project that aims at exploring public perspectives on alternate approaches to the current consent models for health data reuse to take into consideration the unique features of LHSs. The revised model will need to ensure that citizens are given the opportunity to be better informed about upcoming research and have their say, when possible, in the use of their data.

Keywords: health data; informed consent; learning health systems; research ethics; secondary use; survey.

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Conflict of interest statement

Declaration of Conflicting Interests: 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.

Figures

Figure 1.
Figure 1.
Level of agreement of citizen respondents toward each survey item.
Figure 2.
Figure 2.
Level of agreement of REC member respondents toward each survey item.
Figure 3.
Figure 3.
Level of agreement of researcher respondents toward each survey item.
See this image and copyright information in PMC

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