A call for action to strengthen stakeholder readiness for ICF data exchange in European health data space: a...

The European Health Data Space (EHDS) regulation introduces a transformative framework for the exchange of health data among EU stakeholders. Among its interoperability measures is the inclusion of the International Classification of Functioning, Disability and Health (ICF) as a standard for documenting functioning in patient summaries and discharge reports. While ICF offers a biopsychosocial lens to complement disease-centric classifications, the availability of interoperable ICF data remains uneven.

This structured narrative review examines the readiness of EU stakeholders to exchange and utilize ICF data within EHDS. It explores current practices from the data availability and technical infrastructure perspectives, discusses influencing factors such as legislative frameworks and socio-ethical conditions, identifies gaps, and proposes actionable recommendations for the future.

Given the limited data available on this topic, a structured narrative review was performed, including a structured literature search from five databases. Additionally, targeted searches were performed in policy repositories and institutional sources. The search included documents written in English, Finnish, and Italian, and the study objective defined the scope for the literature search. Documents were analyzed to synthesize contextual information across stakeholders, identify gaps, and gain strategic insights.

In total, 78 studies and gray literature references are discussed in the synthesis. The available evidence on ICF data infrastructures across EU stakeholders reveals significant disparities. Many countries lack standardized EHR support for structured ICF data storage. There is a need to include and map the ICF to international key terminologies and health informatics frameworks to ensure semantic interoperability. Low professional awareness further hinders data availability. Unequal digital literacy and limited citizen empowerment compromise efficient use of ICF. To address these gaps, a three-phase roadmap is proposed: (1) promoting ICF awareness and structured documentation, (2) advancing technical integration through FHIR and ontology development, and (3) aligning policy and governance to support scaling.

Integrating the ICF into EHDS is not merely a technical task; it redefines how health is conceived and measured. By addressing readiness across data, technical, legal, and socio-ethical dimensions, the EU can unlock the full potential of functioning data to improve the well-being of its citizens.