Adjust-advancing health data justice: A comparative study of health-related data governance in Canada, Germany, and the United Kingdom

Project aims

To understand whether and how policy documents and health system and policy decision-makers represent the needs, experiences, and perspectives of structurally marginalized groups in health-related data policy.

to explore the needs, experiences, and perspectives of members of structurally marginalized communities in each jurisdiction on the governance of their health-related data; and,

to refine health data justice as a conceptual framework and practice so that it can be applied in the unique socio-political context of each jurisdiction.

The challenge

In an increasingly datafied world, people from structurally marginalized communities face systemic—including algorithmic—oppression, to the detriment of their physical and mental health. The governance of health-related data thus presents an urgent opportunity to integrate a social justice approach to processes and policies for the benefit of structurally

marginalized communities. This three-year qualitative research project will examine the assumptions and practices of health-related data governance that are used by governments and by the organizations responsible for delivering and supporting health services. By amplifying the voices of people from structurally marginalized communities, it will advance the concept of health data justice and develop recommendations for data governance that support the health and wellbeing of such communities.

Key Project Partners: Dr James Shaw, University of Toronto; Dr Amelia Fiske, Technical University of Munich; Prof Ruth Horn, University of Augsburg; Prof Sharifah Sekalala, University of Warwick; Prof Angela Daly, University of Dundee

Bullet pointers on the methods you will use to achieve your aims: document analysis, legal analysis, normative analysis, empirical methods (interviews and focus groups).