Advancing health data justice: A comparative study of health-related data governance in Canada, Germany and the UK.
Advancing health data justice: A comparative study of health-related data governance in Canada, Germany and the UK.
Marginalised communities have faced historical disadvantages and continue to experience many challenges in accessing safe, high-quality health and social care. These challenges have been further exacerbated by events such as COVID-19. For example, in the UK, the mandated digital-first approach across health services led to the exclusion of certain groups with disabilities from accessing healthcare. This project will 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 marginalised communities.
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 marginalised 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 marginalised groups are represented in health data policies.
2) Explore the experiences of marginalised 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.
Outcomes of this 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 decision makers and marginalised communities about how health data justice can be supported.
