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Secondary Use of Health Data in Canada and the European Union

Expectations, Frictions and the Politics of Scale

Bibliographic Data

ID24213626
AuthorsJoseph Donia (0000-0001-5834-8198, Department of Medical Biotechnology & Translational Medicine University of Milan Milan Italy), Luisa Marelli (0000-0002-3960-0033, Department of Medical Biotechnology & Translational Medicine University of Milan Milan Italy)
Year2026
Volume48
Issue8
Pagese70270-e70270
Publication date2026-11-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueSociology of Health & Illness (JOURNAL)
Journal identifiersISSN: 0141-9889 • E-ISSN: 1467-9566
PublisherWiley (PUBLISHER • GB)
DOI10.1111/1467-9566.70270
PMID42811618
OpenAlexW7214979244
LanguageEN
References cited55

In this article, we trace expectations associated with efforts to promote secondary use of health data in Canada and the European Union. In Canada, we focus on initiatives enabling cross‐jurisdictional data access in a highly devolved federal system with parallel commitments to Indigenous data sovereignty. In the EU, we focus on the European Health Data Space, a new regulatory regime intended to facilitate access to health data for clinical care, research, policymaking and innovation across 27 member states. Drawing on a comparative analysis of policy documents and semi‐structured interviews across nine EU member states and four Canadian provinces and one territory, we find that despite institutional differences, secondary use in both jurisdictions is characterised by strikingly similar promissory vocabularies. We argue that these expectations are fundamentally ones of scale: They seek to render health data interoperable, comparable and usable to different ends. At the same time, we document shared frictions: between sovereignty and integration; between access and control; and between private assets and public goods. We understand these as spaces where competing valuations of health data are negotiated. We suggest that secondary use logics are progressively reorienting health systems, with implications for public value, equity and political collectives.

Canada · data interoperability · European Health Data Space · European union · health data governance · Indigenous data sovereignty · Public value · secondary use of health data · Electronic Health Records Systems · Healthcare Systems and Practices · Research Data Management Practices · Health Policy

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