Operationalizing transparency regarding the use of health data for research: a cross-sectional survey of citizens'...

Secondary use of health data can accelerate discovery and enable personalized care, yet social acceptability relies on autonomy, transparency, and trust, especially in the context of security breaches and concerns about misuse. In Quebec, as in many Western settings, there is no formal mechanism to inform individuals about such use, underscoring the need for practical solutions. This quantitative cross-sectional study assessed whether transparency mechanisms increase trust in the use of health data for research; examined their perceived priority and acceptability; and explored effects across population subgroups.

We conducted a cross-sectional telephone survey among 366 adults in Quebec (Canada) selected via stratified random sampling. The sample included a random selection of adult household members based on age. Descriptive statistics, chi-square tests, and exploratory multivariate logistic regressions were performed.

More than half of respondents were unaware that their health data may be used for research. Trust was higher for public-sector than private-sector researchers. Overall, 76% indicated that access to information would increase their trust, particularly younger adults (OR = 1.98, 95% CI: 1.10-3.57). Over 90% judged implementing transparency mechanisms within five years as important, with stronger support among those aware of current data use (OR = 4.63, 95% CI: 1.33-16.20). A secure website was considered acceptable by 75% of respondents as a transparency mechanism. Individuals with high trust in public-sector researchers (OR: 2.06, 95% CI: 1.08-3.94) and younger adults (OR: 2.05, 95% CI: 1.13-3.71) were more likely to consider it important. Exploratory analyses suggested that awareness of current data use for research and pre-existing trust predict increased trust in researchers from various public and private organizations if a secure website is implemented.

Providing information through a transparency mechanism, particularly via a secure website, appears acceptable, valued, and potentially effective for increasing trust in the use of health data for research. Our findings support the feasibility of a web-based transparency portal and suggest tailoring communication to demographic, trust and awareness profiles.