Background: Clinical and biomarker data sharing across institutions accelerates cancer research, yet European data sharing practices are not well characterized.
Methods: We surveyed 75 cancer institutions across 23 European countries on data sharing practices, data standards adoption, and perceived challenges.
Results: Most institutions (>80 %) actively share data for research. However, adoption of clinical data standards remains fragmented: only 33 % use Fast Healthcare Interoperability Resources (FHIR) and 21 % use the Observational Medical Outcomes Partnership (OMOP) data model. The top non-technical hurdles were General Data Protection Regulation (GDPR) compliance (31 %) and legal challenges (24 %). The leading technical hurdle was interoperability (35 %). Despite challenges, 77 % of institutions aim to expand sharing capabilities.
Conclusions: Among those surveyed, GDPR compliance and legal complexity are the dominant barriers to European cancer data sharing. Inconsistent data standards adoption poses risks to European Health Data Space (EHDS) implementation. Investments in legal support, interoperability, and personnel are needed to advance cancer research networking.
Keywords: Data curation; Health information exchange; Patient generated health data; Public health infrastructure.
Copyright © 2026 The Authors. Published by Elsevier B.V. All rights reserved.