Currently submitted to: Journal of Medical Internet Research
Date Submitted: Jul 1, 2026
Open Peer Review Period: Jul 2, 2026 - Aug 27, 2026
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Citizen Perspectives on Transparency in Communicating about Health Data Use in Research: A Qualitative Study
ABSTRACT
Background:
When citizens and patients are consulted, transparency emerges as a necessity in the context of secondary use of health data in research.
Objective:
We aimed to clarify the types of information that Quebec citizens consider most relevant regarding the use of their health data for research purposes, and to identify effective strategies for communicating this information.
Methods:
Eight focus groups, with a total of 53 members of the public were conducted in Quebec, Canada, in 2025. We paid attention to education levels, language spoken at home, and rural vs urban settings. We assessed which information was deemed necessary, how this information should be shared, and the impact of receiving this information on trust towards research with health data. An inductive/deductive hybrid approach was used to develop the coding framework and analyze the data.
Results:
Three types of individual-targeted information about the secondary use of their health data in research emerged as essential from focus groups: study objectives, data used, and study results. Types of information deemed less desirable included profits, penalties, as well as laws and regulations. Most participants favored receiving information through digital communication methods such as a secured website, but a substantial minority preferred analog methods. Participants’ opinions also converged on a set of expectations regarding the communication of information: accessibility, security, reliability, sustainability, and flexibility.
Conclusions:
The results from this study brought forward a potential transparency model that could be tested to meet public expectations regarding transparency in the setting of secondary use of health data for research as well as a framework for evaluating future proposals.
Citation
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