by Cato van Schyndel
van Schyndel, C., De Clerck, C., Laes, E., Hannes, K., & Lambrechts, N. (2026). Empowering citizens in digital health data governance: Insights from an overview of reviews. Big Data & Society, 13(3). https://doi.org/10.1177/20539517261467358
As digital technologies become increasingly embedded in healthcare, growing amounts of personal health data are collected, shared, and reused to support healthcare, research, innovation, and policymaking. In Europe, regulatory frameworks such as the General Data Protection Regulation (GDPR) and the European Health Data Space (EHDS) place increasing emphasis on empowering citizens in health data governance. Despite this emphasis, many citizens remain unaware of how their data are used or what role they can play in decisions about its governance.
To better understand how citizens wish to participate in health data governance, we conducted an overview of reviews synthesizing evidence from 35 reviews published between 2011 and 2023. Our review explores citizen participation in health data governance and examines the conditions that enable participation to become feasible, appropriate, meaningful, and effective in practice.
Across the literature, a consistent picture emerged. Citizens are generally willing to support the use and sharing of health data, particularly when it contributes to better healthcare and research. However, their involvement in governance often remains limited to being informed or consulted, while many citizens express an interest in playing a more meaningful role. Our review highlights that meaningful participation depends on more than formal rights. It requires trust in the organizations handling health data, transparency about how data are used, clear accountability mechanisms, and opportunities for citizens to participate in ways that fit their needs and capabilities.
As the EHDS continues to be implemented across Europe, it reinforces the need to better understand how citizens wish to participate in health data governance. We hope our review contributes to this discussion by bringing together the growing evidence on what meaningful participation can look like, and what is needed to make it a reality.
