White Paper

Secondary Use of Health Data, from Legislation to Implementation: Establishing Trust Through De-identification in the European Health Data Space (EHDS

Secondary Use of Health Data, from Legislation to Implementation: Establishing Trust Through De-identification in the European…

Secondary Use of Health Data, from Legislation to Implementation: Establishing Trust Through De-identification in the European Health Data Space (EHDS

Pages 17 Pages

This white paper examines how EU member states can implement secure secondary use of health data under the European Health Data Space. It argues that public trust depends on consistent, transparent, and accountable de-identification through anonymization or pseudonymization. Key challenges include limited expertise, unclear responsibilities, fragmented national practices, and risks to privacy, interoperability, and data utility. The paper recommends a centralized de-identification function overseen by national Health Data Access Bodies. This shared capability would apply uniform rules, support lawful data linkage, maintain auditable records, tailor protections to specific use cases, reduce duplication, and improve scalability across regions and borders.

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