JMIR Publications

ABSTRACT

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<.001) and health data (t(1040)=-12.47, P<.001). Medical data were considered more acceptable to store than lifestyle data (Δ=0.38, P<.001). Both personal and public benefits motivated support, but commercial data use reduced willingness to share, particularly when framed around individual gain rather than collective benefit.

Conclusions:

Citizens view PDS as potentially valuable instruments for health data governance, but their support is conditional and shaped by understanding and psychographic factors rather than by sociodemographic factors. PDS can contribute to meaningful citizen participation only when technological features are embedded in governance arrangements that provide real agency, credible safeguards, and demonstrable public value.