European cancer institutions increasingly rely on shared clinical, imaging, genomic and trial data to support research, reproducibility and emerging AI capabilities in cancer care. Yet data exchange across countries remains uneven, with legal, technical and organisational barriers limiting wider collaboration. A recent analysis published in the International Journal of Medical Informatics assessed survey responses from 75 institutions in 23 European countries. It found active research data sharing alongside fragmented standards adoption and persistent concerns around GDPR compliance, legal interpretation and interoperability. The European Health Data Space provides the wider policy context, with implementation depending on national capabilities, legal standards, data ontologies and transfer protocols.
Survey Scope and Institutional Participation
The questionnaire covered institutional information, data storage and sharing, and data processing and technology. It contained 22 questions and used closed-end and open-ended formats to capture institutional practices and respondent perspectives. The “AI and Infrastructure Task Force” of the EU Joint Action Network of Expertise constructed the questionnaire. Institutions qualified for contact when they provided cancer care or participated in academic cancer research, operated in Europe and had a primary contact participating in JANE or the European Network of Comprehensive Cancer Centres. The survey reached 410 individuals at around 150 institutions, with data collected through an online form between May and August 2024. The final response set included 75 institutions across 23 countries, representing a 20% response rate.
The survey collected institutional and respondent-level information only. No patient data, identifiers or clinical records were accessed. Responses came mainly from clinical, informatics or research leaders. Results were reported in aggregate and free-text responses were grouped by similarity. Responding institutions reflected a broad cancer data environment. Most participated in clinical trials and primary cancer care, while many contributed to basic and translational research. Around half were academic medical centres, with further representation from research institutions and regional hospitals.
Data Sharing Is Active but Uneven
Most participating institutions collected complex cancer-related data, including medical records, clinical trial data, imaging data and genomic data. Sharing rates differed by data type. Clinical trial data showed the highest sharing rate among the main categories, followed by imaging, primary care records and genomic data. Inter-institutional research represented the dominant purpose for data sharing, with a large majority of institutions sharing data for this purpose. Among institutions not yet sharing data, most aimed to expand their sharing capabilities.
Cancer-specific data sharing sits within a wider European infrastructure agenda. The European Medical Information Framework integrated millions of de-identified patient records across countries.
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The European Health Data and Evidence Network standardised observational data from 11 countries into a common data model. Cancer-specific initiatives support coordination across registries, imaging, electronic health records and genomic data. These examples show that large-scale sharing can operate across national borders, while the survey responses show that adoption remains uneven across institutional settings and data categories. Institutions most often shared all four major data types together when external research sharing took place.
Standards, Technology and Legal Barriers
Clinical data standards showed substantial variation across institutions. Only 33% used Fast Healthcare Interoperability Resources, and 21% used the Observational Medical Outcomes Partnership common data model for data sharing. These figures point to notable gaps in interoperability at a time when the European Health Data Space depends on practical implementation across diverse healthcare systems. Technical arrangements also varied. About half of respondents relied on external service providers for data sharing, while institutions used a mix of open-source software, commercial cloud solutions and in-house tools.
The leading technical hurdle was interoperability, reported by 35% of respondents. Security and privacy protocols followed, while storage space or connection speed and technical staffing were also reported. Non-technical barriers outweighed individual technical hurdles. General Data Protection Regulation and privacy compliance represented the most common non-technical hurdle, reported by 31% of respondents. General legal challenges followed at 24%. Resourcing constraints and administrative complexity also appeared among the main barriers. Legal interpretation, compliance processes and institutional risk aversion can therefore limit data exchange even when institutions collect and share complex cancer data.
European cancer institutions already share substantial clinical, imaging, genomic and trial data for research, but major barriers remain. Legal complexity and GDPR-related compliance dominate the non-technical landscape, while interoperability leads the technical challenges. Uneven use of Fast Healthcare Interoperability Resources and the Observational Medical Outcomes Partnership common data model creates practical risks for European Health Data Space implementation. The responses support a clear need for legal support, interoperability infrastructure and skilled personnel to strengthen cancer data sharing across Europe.
Source: International Journal of Medical Informatics
Image Credit: iStock
References:
Hogstrom L, Laurinavicius A, Giraldez Alvarez M et al. (2026) European cancer data sharing: Analyses of an international survey. International Journal of Medical Informatics; 218: 106544.
