Advancing newcomer health data justice
We are working with longtime Access Alliance collaborator, Jay Shaw, to support his work on ADJUST (Advancing health data justice), a project that explores newcomer understanding of health-related data and their ideas for developing policy and practice standards that promote justice.
According to Dr. Shaw’s earlier research, Health data justice: building new norms for health data governance, “The retention and use of health-related data by government, corporate, and health professional actors risk exacerbating the harms of colonial systems of inequality in which health care and public health are situated, regardless of the intentions about how those data are used. In this context, a data justice perspective presents opportunities to develop new norms of health-related data governance that prioritize health justice as the primary objective. In this perspective, we define the concept of health data justice, outline urgent issues informed by this approach, and propose five calls to action from a health data justice perspective.”
The project explores policies, conduct interviews, and engages communities in three countries: Canada, the United Kingdom, and Germany. According to Dr. Shaw, comparing across these countries will make it possible to build new insights on health data justice and explore practical possibilities for its implementation. Outputs from the project will include a guidebook and open webinars outlining health data justice and pathways for its implementation in health care and public health.
We have partnered with Dr. Shaw to conduct focus groups with two key communities: newcomers to Canada and individuals with disabilities. We will conduct 4 focus groups in total, 2 with newcomers and 2 with seniors with disabilities. The focus groups we will conduct will help build essential knowledge on achieving health data justice, informed by the perspectives of community members.
About ADJUST
ADJUST is a comparative study of health-related data governance in Canada, Germany, and the United Kingdom. As ADJUST’s Canadian research partner, Jay seeks to develop and apply the idea of “health data justice”, an approach to making decisions about who accesses and uses health-related data that specifically focuses on the needs of marginalized communities. Marginalized communities are those who have faced historical disadvantages and continue to experience challenges accessing safe, high-quality health and social care.
The project is timely.
The issue of health data justice has become more acute with the increased focus on and use of recent advances in technologies that need large amounts of health-related data to be built, particularly health-focused artificial intelligence (AI). It is more urgent to ensure that uses of health-related data are in the best interests of all communities, particularly those who have faced these historical disadvantages and biases.
The research has three objectives:
- Explore policy documents and interview decision-makers to understand how the needs of marginalized groups are represented in health data policies.
- Explore the experiences of marginalized communities through documents, interviews, and focus groups (group discussions) to understand their views on health data governance.
- 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 marginalized communities about how health data justice can be supported.
Related Access Alliance activities
Our Community-based Research (CBR) framework
To ensure that research leads to promoting equity, we believe that the knowledge production process itself needs to be made more equitable. Thus, our research is grounded on a community-based research (CBR) framework with proven capacity to make the research process more inclusive, empowering, and equity driven.
Community Based Research Training for Peer Researchers
Our training introduces Peer researchers, researchers in the community with lived experience or working with the population of interest, to ethical CBR practice. In this training we provide an overview of the research process from conceptualization to design a research protocol a research protocol, collection of sensitive data or collection of data from sensitive populations, basics of analyzing data, basics of analyzing data, interpreting the results in accessible format, and knowledge mobilization.