EHDS Data Continuum: A Proposed IHE Integration Profile for Bridging Primary and Secondary Health Data Use

Read full text
Authors: Aly Khalifa, Alexander Berler, Rada Hussein
Cited by: 1

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.

Fields of Study & Subjects

Electronic Health Records Systems Research Data Management Practices Scientific Computing and Data Management

Publication details

Journal / source
Studies in health technology and informatics
Publisher
IOS Press
Volume
336
Pages
1172–1176
Publication date
21 May 2026
Language
EN
Document type
Book chapter