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

• Antragstellerin: Amelia Fiske, Ph.D.
• Fachliche Zuordnung: Public Health, Gesundheitsbezogene Versorgungsforschung, Sozial- und Arbeitsmedizin
• Förderung: Förderung seit 2024
• Projektkennung: Deutsche Forschungsgemeinschaft (DFG) - Projektnummer 542611408

The main aim of the proposed project is to develop and apply the idea of “health data justice”, which is an approach to controlling who gets to access and use health-related data that specifically focuses on the needs of marginalized communities. Marginalized communities are those who have faced historical disadvantage and continue to experience many challenges accessing safe, high-quality health and social care. Recent advances in technologies that need large amounts of health-related data to be built, such as health-focused artificial intelligence (AI), make it more urgent and important to ensure that uses of health-related data are in the best interests of marginalized communities. The project will explore policies, conduct interviews, and engage communities in three countries: Canada, the United Kingdom, and Germany. Comparing across these countries will make it possible to build new insights on health data justice. The research has three objectives: 1) Explore policy documents and interview decision-makers to understand how the needs of marginalized groups are represented in health data policies. 2) Explore the experiences of marginalized communities through documents, interviews, and focus groups (group discussions) to understand their views on health data governance. 3) Develop and refine the health data justice framework and engage communities through focus group discussion and graphic stories. We will also promote positive benefits from our project by working with policy decisionmakers to explore how health data justice can be built into health-related data policy in the countries involved. The project uses an approach called “feminist empirical bioethics”, which uses insights from different disciplines to develop better approaches to supporting social justice for marginalized communities. Outcomes of our project will include a better understanding of the idea of health data justice, practical tools for its application, and graphic stories tailored to different communities in each country. These will help to enhance awareness among health policy decisionmakers and marginalized communities about how health data justice can be supported. The research involves collaboration across countries, ensuring diverse perspectives are considered, and aims to empower marginalized communities in health-related data governance.

• DFG-Verfahren: Sachbeihilfen
• Internationaler Bezug: Großbritannien, Kanada
• Mitverantwortliche: Privatdozentin Ruth Horn, Ph.D.; Privatdozent Dr. Stuart McLennan
• Kooperationspartnerinnen / Kooperationspartner: Professorin Sharifah Sekalala, Ph.D.; Professor James Shaw, Ph.D.