Rethinking Trust in Synthetic Health Data: Lessons From 7 European Research Initiatives

dc.contributor.authorDeclerck, Jens
dc.contributor.authorKalra, Dipak
dc.contributor.authorAirola, Antti
dc.contributor.authorAmer
dc.contributor.authorAhmed Youssef Ali
dc.contributor.authorChatzichristos, Christos
dc.contributor.authordel Mar Mañu Pereira
dc.contributor.authorMaria
dc.contributor.authorde Brito Robalo, Bruno M.
dc.contributor.authorGhini, Francesco
dc.contributor.authorGutierrez-Torre, Alberto
dc.contributor.authorHoogteijling, Sem
dc.contributor.authorHultsch, Susanne
dc.contributor.authorRamon, Jan
dc.contributor.authorReidel, Sara
dc.contributor.authorRegazzoni, Francesco
dc.contributor.authorSilva, Luís
dc.contributor.authorSilveira, Inês
dc.contributor.authorSofia, Tsekeridou
dc.contributor.authorMaes, Christophe
dc.contributor.organizationfi=terveysteknologia|en=Health Technology|
dc.contributor.organization-code1.2.246.10.2458963.20.28696315432
dc.converis.publication-id523444888
dc.converis.urlhttps://research.utu.fi/converis/portal/Publication/523444888
dc.date.accessioned2026-05-19T20:11:25Z
dc.description.abstract<p>Synthetic data generation (SDG) structured health data is increasingly promoted as a solution to longstanding barriers in health data access. It is offering the promise of privacy-preserving data reuse for research, innovation, and policy. Despite rapid technical advances, the adoption of synthetic health data in real-world settings remains limited. Shaped by challenges around data quality, representativeness, infrastructure readiness, trust, and legal uncertainty, this viewpoint draws on experiences from 7 European research initiatives within the HealthData4EU cluster to reflect on how SDG is being operationalized in practice. It synthesizes cross-project insights to highlight recurring methodological and governance tensions and to examine their implications for trust and responsible use. The analysis argues that trustworthy SDG cannot be achieved through technical optimization alone but requires alignment between evaluation practices, upstream data stewardship, regulatory clarity, and sustained stakeholder engagement. Addressing these conditions is essential for moving synthetic data from experimental pilots toward a credible and sustainable component of European health research ecosystems.</p><p><br></p>
dc.identifier.eissn1438-8871
dc.identifier.jour-issn1439-4456
dc.identifier.urihttps://www.utupub.fi/handle/11111/60904
dc.identifier.urlhttps://doi.org/10.2196/83369
dc.identifier.urnURN:NBN:fi-fe2026051949738
dc.language.isoen
dc.okm.affiliatedauthorAirola, Antti
dc.okm.discipline113 Computer and information sciencesen_GB
dc.okm.discipline113 Tietojenkäsittely ja informaatiotieteetfi_FI
dc.okm.discipline316 Nursingen_GB
dc.okm.discipline316 Hoitotiedefi_FI
dc.okm.internationalcopublicationinternational co-publication
dc.okm.internationalityInternational publication
dc.okm.typeA2 Scientific Article
dc.publisherJMIR Publications Inc.
dc.publisher.countryCanadaen_GB
dc.publisher.countryKanadafi_FI
dc.publisher.country-codeCA
dc.relation.articlenumbere83369
dc.relation.doi10.2196/83369
dc.relation.ispartofjournalJournal of Medical Internet Research
dc.relation.volume28
dc.titleRethinking Trust in Synthetic Health Data: Lessons From 7 European Research Initiatives
dc.year.issued2026

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