| Title |
European cancer data sharing: Analyses of an international survey |
| Authors |
Hogstrom, Larson ; Laurinavičius, Arvydas ; Alvarez, Miguel Giraldez ; Nakken, Sigve ; Guldvik, Ingrid Jenny ; Sanchez, Carlos Miguez ; Papadodima, Olga ; Voutetakis, Konstantinos ; Mæhle, Per Magnus ; Zerbe, Norman ; Šekerija, Mario ; Fullaondo, Ane ; Hovig, Eivind |
| DOI |
10.1016/j.ijmedinf.2026.106544 |
| Full Text |
|
| Is Part of |
International journal of medical informatics.. Elsevier B.V.. 2026, vol. 218, art. no. 106544, p. [1-5].. ISSN 1386-5056. eISSN 1872-8243 |
| Keywords [eng] |
data curation ; health information exchange ; patient generated health data ; public health infrastructure |
| Abstract [eng] |
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. |
| Published |
Elsevier B.V |
| Type |
Journal article |
| Language |
English |
| Publication date |
2026 |
| CC license |
|
