Extending the W3C Data Privacy Vocabulary to Cover the German Health Data Use Act - Lessons Learned.
TL;DR
The creation of a DPV extension representing the German Health Data Use Act (Gesundheitsdatennutzungsgesetz (GDNG) that has been set into force in March 2024 is presented, which sets the foundation of aligned privacy terms for future EHDS member states looking to build a national vocabulary aligned with the EHDS.
Abstract
Finding, sharing, and reusing data requires common interoperable vocabularies to adequately describe machine-actionable data policies. Semantic Web standards are a proven way to express such information describing data access and reuse. Narrative descriptions get a stable and agreed meaning by formal definitions of terms that have a globally unique identifier. The Data Privacy Vocabulary (DPV) represents a community standard for privacy, data protection, and related topics. DPV uses modular namespaces to define jurisdictions, such as "EU", and to represent concepts from laws within that jurisdiction, such as the General Data Protection Regulation (GDPR) and the European Health Data Space (EHDS). In this work, we present the creation of a DPV extension representing the German Health Data Use Act (Gesundheitsdatennutzungsgesetz (GDNG)) that has been set into force in March 2024. The GDNG regulates sharing and using health data for secondary use, such as research purposes and policymaking. It builds the German legal foundation for the future EHDS as the European initiative and regulation providing rules for sharing of health data within Europe. The parallel development of the EHDS and GDNG extensions resulted in many shared concepts, which contributed to an overarching extension: the DPV sector health extension. It sets the foundation of aligned privacy terms for future EHDS member states looking to build a national vocabulary aligned with the EHDS. All extensions were released as draft extensions with the latest DPV version 2.3, released 25th of February 2026.