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Lessons from federated networks for implementing the European health data space. Empirical study
Magdalena Kogut-Czarkowska1,2, Mahsa Shabani1,3
1Faculty of Law and Criminology, Ghent University, Ghent, Belgium.
Digital Health
|July 25, 2026
Summary
Federated repositories offer health data sharing solutions, particularly for research and the European Health Data Space. However, their effectiveness depends on context, with limitations in resources, governance, and suitability for all research.
Area of Science:
- Health Informatics
- Data Governance
- Digital Health
Background:
- Federated repositories are emerging as a model for health data sharing.
- Secondary use of health data is crucial for research and innovation.
- The European Health Data Space aims to facilitate cross-border health data exchange.
Purpose of the Study:
- To gather expert insights on federated health data repositories.
- To understand their role in secondary data use and the European Health Data Space.
Main Methods:
- Qualitative study utilizing semi-structured interviews.
- 19 experts involved in federated repository development were interviewed.
- Thematic analysis of interview findings.
Main Results:
- Federated networks are beneficial for research data sharing, engaging new providers, and overcoming trust barriers.
- Identified limitations include high resource demands, complex governance, privacy risks, and limited suitability for certain research types.
- Perceived effectiveness is context-dependent.
Conclusions:
- Federated repositories provide governance and technical solutions for health data sharing, especially concerning trust and provider engagement.
- Their utility is not universal and depends on specific research contexts.
- Findings inform discussions on data governance for secondary use and federated infrastructures within the European Health Data Space framework.
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