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, imaginaries, and expectations involved in the pursuit of digitally-enabled health systems in Canada and the EU. In addition to generating new theoretical perspectives on the politics of intensified data sourcing across borders, it will also offer a set of policy recommendations for responsible design and governance.

Works in Progress

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

Can Canada Learn from the European Health Data Space? In this commentary, we argue that Canada can learn from the EHDS policy experience. We suggest that comparatively examining potential pitfalls generates lessons for health data governance, connecting debates to broader discussions about community rights, accountability, public value, and the practical challenges of integrating data across jurisdictions.

Status: Under review

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: In development

The Global Politics of Intensified Data Sourcing: 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 global politics of digital health data from a comparative angle, focusing on the EU (and its member states) and Canada (including its provinces).

Status: In development

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: In development