Project Title
A Comparative Study of Health Data Spaces in Canada and the EU
Organization
University of Milan, Italy
Funding
Social Sciences and Humanities Research Council (SSHRC) of Canada Postdoctoral Fellowship Award, and Cariplo Foundation (2020-1314).
Project Description
Health data spaces are growing in number internationally. While their characteristics vary from one jurisdiction to another, they are all are made up of technical infrastructures and governance arrangements that aim to make health data available for clinical care, as well as research, policymaking, and innovation.
Grounded in a larger study on the social and ethical implications of the newly adopted European Health Data Space Regulation, this comparative research project will examine the practical work and value expectations involved in the pursuit of digitally-enabled health systems in Canada and the EU. In addition to generating new theoretical insights into the politics of intensified data sourcing across borders, it will also offer a set of policy recommendations for responsible design and governance.
Publications:
Selective Visibility in Datafied States: Examining Presence and Absence in the European Health Data Space
The European Health Data Space is the first such ‘data space’ to take shape as part of the European Commission’s broader strategy for data. In spite of growing academic literature on the Regulation, broader awareness, discussion, and debate about the EHDS, has been scarce. This paper will engage with the politics of absence in intensified data sourcing, asking how absences/presences are made in different places and different spaces, and what its consequences are for different publics.
Status: Published
Can Canada Learn from the European Health Data Space?
Health data re-use continues to move up the policy agenda in Canada, most recently in funding announced for a new national Health Sector Data Space through the renewed AI strategy. In this commentary I outline what Canada might learn from the recently adopted European Health Data Space Regulation.
Status: Published
A Systematic Review of Social and Ethical Issues Associated with the European Health Data Space
This review synthesized social and ethical issues associated with the development and implementation of the European Health Data Space. It’s intended as a guide for researchers and policymakers involved in the EHDS and other health data spaces or platforms internationally.
Status: Published
TEHDAS2 Second Public Consultation on the European Health Data Space Regulation.
This discussion paper consolidates our research group’s recent submission to the TEHDAS2 second public consultation on the European Health Data Space Regulation. The document addresses core aspects of the secondary use framework, including fee structures, permitted and prohibited uses of health data, metadata cataloguing, data access application and request procedures, enforcement and sanctions, and individual opt-out mechanisms.
Status: Published
In Progress
Expectations of Health Data Integration in Canada and the EU
This paper will examine the evolving trajectories of health data spaces in Canada and the European Union by tracing how shifting expectations shape their development. Drawing on a genealogy of health data initiatives, the paper will situate contemporary projects such as the Pan-Canadian Health Data Charter and the European Health Data Space within a long durée. Central to these initiatives are competing interpretations of ‘sharing’ and ‘integration’ pursued through varying strategies of social and technical interoperability.
Status: Under Review
Contested Sovereignties and the Politics of Health Data Access and Use in Canada
Digital data play an increasingly important role in global politics. Health data in particular are of increasing interest to policymakers and corporate actors who aim to leverage them to promote sovereignty, security, economic growth, or competitive and strategic advantages. This paper will examine the politics of digital health data in Canada, focusing on the role that sovereignties play in the Canadian federation.
Status: In Development
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