OpenEHDS is being developed as a neutral, non-commercial foundation initiative focused on turning EHDS from a legal framework into practical, reusable technical reality.
Mission
OpenEHDS is built on the belief that EHDS infrastructure must be:
- interoperable by design
- privacy-preserving by default
- operationally realistic
- publicly understandable
The initiative also creates a neutral space for dialogue between public institutions, regulators, patient organizations, researchers, and technology stakeholders through open discussion, workshops, and co-creation of reference architectures.
Scope
OpenEHDS focuses primarily on EHDS secondary use of electronic health data, where regulatory, technical, and organizational complexity is highest.
The scope includes the full secondary-use lifecycle:
- dataset preparation for approved secondary-use cases
- controlled access based on data permits
- operation in secure processing environments
- auditable and transparent lifecycle governance
Controlled data mediation layer
EHDS does not create unrestricted data federation. It establishes controlled, permit-based access that is limited by purpose, time, and auditable governance.
OpenEHDS explicitly addresses this reality as a controlled data mediation layer that:
- is not a central data lake
- is not a permanent data repository
- is not a commercial data platform
It is a temporary and controlled processing layer used to assemble permit-compliant datasets, enforce policies, and ensure full traceability.
What OpenEHDS builds
Open reference components and architecture patterns, including:
- permit-aware dataset assembly engines
- policy enforcement modules for purpose limitation, opt-out, and legal exceptions
- connectors across health data holders, health data access bodies, and secure processing environments
- audit, logging, and data lineage capabilities
- temporary-data lifecycle mechanisms, including TTL and controlled deletion
- interoperability mappings and transformations aligned with EHDS, FHIR, and future implementing acts
What OpenEHDS does not do
- does not act as a health data access body
- does not host or monetize medical data
- does not operate secure processing environments
- does not replace national or EU governance institutions
OpenEHDS is an enabler, not a system operator.
Governance and trust
OpenEHDS is structured around transparent governance, open contribution processes, public documentation, and a clear separation from commercial exploitation of outcomes.
Open source presence
- GitHub organization: Open-EHDS on GitHub
