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EHDS Data Continuum: A Proposed IHE Integration Profile for Bridging Primary and Secondary Health Data Use
Aly Khalifa1, Alexander Berler2, Rada Hussein3
1Department of Artificial Intelligence and Informatics, Mayo Clinic, 200 1St Street SW, Rochester, Minnesota, 55905, USA.
Abstract:
The European Health Data Space (EHDS) aims to enable both the primary use of health data for direct patient care (EHDS1) and the secondary use of data for research, innovation, and public health (EHDS2). While each pillar is supported by distinct infrastructures-MyHealth@EU for clinical continuity and HealthData@EU for trusted reuse-the lack of seamless integration between them poses significant technical, governance, and legal challenges. Existing standards such as HL7 CDA, HL7 FHIR, OHDSI OMOP, CDISC, EEHRxF, and HealthDCAT-AP, together with IHE integration profiles including XDS, XCA, XCPD, ATNA, and BPPC, provide a robust foundation but remain fragmented across domains. This paper introduces the EHDS Data Continuum, a proposed IHE integration profile designed to bridge EHDS1 and EHDS2 by harmonizing interoperability, data quality, privacy, and governance requirements across the full data lifecycle. By aligning primary and secondary use within a coherent technical and policy framework, the EHDS Data Continuum supports the realization of a trustworthy, interoperable, and citizen-centered European Health Data Space.
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