We Are in control: A survey study of public perceptions of a personal data space for citizen-centered health data governance (Preprint)

BACKGROUND Personal Data Spaces (PDS) are increasingly promoted as digital infrastructures that enable citizen participation in health data governance by strengthening transparency and individual control over personal health data. Despite growing policy and technological attention, empirical evidence remains limited on whether citizens view PDS as acceptable and desirable governance instruments, how they evaluate different types of data and purposes of data use, and which factors shape public support. OBJECTIVE The objective of this study was to examine how citizens evaluate We Are, a proposed citizen-centered Personal Data Space model in Flanders, Belgium, and to assess overall support, reasons for endorsement, preferences for control versus transparency, acceptability of storing different types of health data, and acceptance of different purposes of data use. METHODS We conducted an online survey among adults aged 18-79 years in Flanders, Belgium (N=1,041). The sample was quota-based and representative for gender, age, education, province, and urbanization level. Participants evaluated the We Are model after reading a description. Measures included overall evaluation of the model, reasons for support, preferences for transparency and control, willingness to store medical versus lifestyle data, and willingness to share data across vignette-based scenarios varying purpose of use and recipient type. Data were analyzed using t-tests, linear regression, and mixed models with repeated measures. RESULTS Overall evaluations of We Are were moderately positive (Mean 2.51 on a 1-4 scale) and did not differ significantly from the scale midpoint (t(1040)=0.70, P=.24). Sociodemographic characteristics explained little variance in support, whereas understanding of the We Are model and psychographic factors substantially increased explained variance (R² increased from .03 to .24). Higher trust in technology was positively associated with support, while stronger privacy attitudes and privacy-related fears were negatively associated. Respondents valued control more strongly than transparency for both general personal data (t(1040)=-10.37, P