Accurate Yet Privacy-Preserving Determination of Case Numbers Across German University Hospital Health Data

Area of Science:

• Health Informatics
• Data Privacy
• Medical Research Infrastructure

Background:

• Protecting patient privacy in pseudonymized health data is crucial.
• Large medical datasets pose re-identification risks even with pseudonymization.
• The German Research Data Portal for Health (FDPG) provides access to diverse patient-derived routine data.

Purpose of the Study:

• To present the data protection approach of the distributed FDPG infrastructure.
• To share operational insights from the FDPG's first two years.
• To offer a blueprint for the European Health Data Space (EHDS).

Main Methods:

• Data harmonization using a common HL7 FHIR-based model.
• Implementation of a feasibility query function for complex cohort definition.
• Distributed data storage at participating sites.

Main Results:

• The FDPG enables complex cohort queries across multiple institutions.
• Re-identification risks persist despite high aggregation levels.
• The FDPG aims to balance data utility with minimized re-identification risk.

Conclusions:

• The FDPG's data protection strategy is crucial for secure health data sharing.
• The FDPG's operational experience offers valuable lessons for future data infrastructures.
• The implemented approach serves as a foundation for the European Health Data Space (EHDS).