Secondary Use of Health Data in Canada and the European Union: Expectations, Frictions and the Politics of Scale

Article by Joseph Donia and Luca Marelli: “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…(More)”.