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

A structured narrative review

Bibliographic Data

ID22071185
AuthorsLinda Nieminen (Tampere University, corresponding author), Heidi Anttila (0000-0002-3435-1939, Finnish Institute for Health and Welfare), Harri Ketamo (Asian Arts Initiative), Mauro Zampolini (0000-0001-8089-8583, Universidad de Cantabria), Andrea Martinuzzi (0000-0002-0319-3579, IRCCS Eugenio Medea), Vincenzo Della Mea (0000-0002-0144-3802, University of Udine)
Year2026
Volume14
Pages1786004-1786004
Publication date2026-04-20
Open AccessYes
TypeARTICLE
VenueFrontiers in Public Health (JOURNAL)
Journal identifiersISSN: 2296-2565 • E-ISSN: 2296-2565
PublisherFrontiers Media SA (PUBLISHER • CH)
DOI10.3389/fpubh.2026.1786004
PMID42088236
OpenAlexW7154975773
LanguageEN
References cited55

Background: 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. Objective: 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. Methods: 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. Results: 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. Conclusion: 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

Data exchange · Data governance · European union · Health information exchange · International Classification of Functioning, Disability and Health · Interoperability · Semantic interoperability · Stakeholder · Assistive Technology in Communication and Mobility · Cerebral Palsy and Movement Disorders · Disability Rights and Representation · Health Informatics

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