Data-intensive and needs-driven research can deliver substantial health benefits. However, concerns with privacy loss, undisclosed surveillance, and discrimination are on the rise due to mounting data breaches. This can undermine the trustworthiness of data processing institutions and reduce people's willingness to share their data. Involving the public in health data governance can help to address this problem by imbuing data processing frameworks with societal values. This study assesses public views about involvement in individual-level decisions concerned with health data and their association with trust in science and other institutions.
Cross-sectional study with 162 patients and 489 informal carers followed at two reference centers for rare diseases in an academic hospital in Portugal (June 2019–March 2020). Participants rated the importance of involvement in decision-making concerning health data sharing, access, use, and reuse from “not important” to “very important”. Its association with sociodemographic characteristics, interpersonal trust, trust in national and international institutions, and the importance of trust in research teams and host institutions was tested.
Most participants perceived involvement in decision-making about data sharing (85.1%), access (87.1%), use (85%) and reuse (79.9%) to be important or very important. Participants who ascribed a high degree of importance to trust in research host institutions were significantly more likely to value involvement in such decisions. A similar position was expressed by participants who valued trust in research teams for data sharing, access, and use. Participants with low levels of trust in national and international institutions and with lower levels of education attributed less importance to being involved in decisions about data use.
The high value attributed by participants to involvement in individual-level data governance stresses the need to broaden opportunities for public participation in health data decision-making, namely by introducing a meta consent approach. The important role played by trust in science and in other institutions in shaping participants' views about involvement highlights the relevance of pairing such a meta consent approach with the provision of transparent information about the implications of data sharing, the resources needed to make informed choices and the development of harm mitigation tools and redress.