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What makes a data space for research with health data trustworthy from the perspective of the Swiss population? A DSI project team has published the report «Public Trust in a Swiss Health Data Space» to answer this question.
Access to health data for secondary use plays a central role in promoting scientific research, health services and public health in Switzerland. For three decades, the federal and cantonal governments have been working to provide health professionals, researchers and the public with access to these data. However, technical and legal hurdles, as well as societal concerns, have slowed down progress.
To overcome these obstacles, the Federal Office of Public Health (FOPH), together with the Federal Statistical Office (FSO), has launched the «Data Space for Health-Related Research» project as part of the DigiSanté program (2025-2034). The aim is to create a secure and transparent ecosystem for the exchange of health-related data that supports scientific research and provides clear guidelines.
In the face of growing public skepticism, researchers and health organizations are emphasizing the need to strengthen citizens' trust. Clear, comprehensible communication and the introduction of high data protection standards are crucial to creating broad acceptance for the health data space and meeting the expectations of the population.
In this context, the project team with Felix Gille (DSI), Federica Zavattaro (DSI) and Paola Daniore (EPFL) has published the project report «Public Trust in a Swiss Health Data Space: A 2023–2024 Literature and Interview Study to Inform Policy and Governance for a Trustworthy Health Data Space for Health-Related Research in Switzerland»This was financed by Novartis International AG and Sanitas Health Insurance (Foundation).
