Health data justice: building new norms for health data governance

Abstract

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 hold 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.