Public Perceptions of Personal Data Spaces for Citizen-Centered Health Data Governance in Belgium: Cross-Sectional Survey

Abstract

Background/Objectives: Personal Data Spaces (PDSs) are promoted as infrastructures that strengthen citizen participation in health data governance through transparency and individual control. However, empirical evidence on citizens’ views of PDSs remains limited. This study examined how citizens evaluate We Are, a proposed citizen-centered PDS model in Flanders, Belgium, including overall support, preferences for control and transparency, acceptance of different data types and uses, and factors associated with support. Methods: An online survey was conducted among 1041 adults aged 18–79 years in Flanders using quotas for gender, age, education, province, and urbanization. Participants evaluated the We Are model and completed measures concerning reasons for support, control and transparency, storage of medical and lifestyle data, and data sharing across purposes and recipient types. Data were analyzed using t-tests, linear regression, and mixed models with repeated measures. Results: We Are evaluations were ambivalent but slightly positive (M = 2.51 on a 1–4 scale) and did not differ significantly from the scale midpoint. Sociodemographic characteristics explained little variance in support (R2 = 0.033), whereas adding understanding and psychographic factors increased variance to R2 = 0.238. Respondents valued control more than transparency and were more willing to store medical than lifestyle data (Δ = 0.380, p < 0.001). Willingness to share data was higher for both personal and public non-commercial uses than for public commercial uses, whereas personal commercial uses were rated lower. Private recipients were associated with lower willingness to share than public recipients. Conclusions: Support for PDSs was conditional and related more strongly to understanding and psychographic factors than to sociodemographic characteristics. These findings indicate that PDSs should be embedded in governance arrangements that provide real agency, credible safeguards, and demonstrable public value.