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

Area of Science:

• Health Informatics
• Data Governance
• Interoperability Standards

Background:

• The European Health Data Space (EHDS) aims for primary (EHDS1) and secondary (EHDS2) data use.
• Distinct infrastructures (MyHealth@EU, HealthData@EU) lack seamless integration, causing technical, governance, and legal hurdles.
• Existing standards (HL7, OHDSI, CDISC) and IHE profiles are fragmented.

Purpose of the Study:

• Introduce the EHDS Data Continuum, a novel IHE integration profile.
• Bridge the gap between EHDS1 and EHDS2.
• Harmonize interoperability, data quality, privacy, and governance across the data lifecycle.

Main Methods:

• Proposing a new IHE integration profile: EHDS Data Continuum.
• Aligning primary and secondary data use requirements.
• Developing a coherent technical and policy framework.

Main Results:

• The EHDS Data Continuum offers a solution for integrating EHDS1 and EHDS2.
• It addresses fragmentation by harmonizing key requirements.
• Facilitates a unified approach to health data management.

Conclusions:

• The EHDS Data Continuum is crucial for realizing a trustworthy, interoperable European Health Data Space.
• It supports a citizen-centered approach to health data.
• Enables seamless data flow for both clinical care and research.