Increasing Innu participation in public health: a qualitative study of data governance among Innu in Labrador, Canada

Indigenous Peoples are not always engaged in setting health priorities and decry misapplication and misinterpretation of their data. Indigenous data governance and sovereignty can help overcome these issues, but they are variably implemented across Nations. Public health data governance is uniquely challenging, with implementation gaps presenting an exciting opportunity to define and remove barriers at all levels of government.

We sought to identify barriers (what) and facilitators (how) to implementing a local data governance plan with the goal of increasing Innu participation in public health. Working with two First Nations in Newfoundland and Labrador, Canada, and supported by strong relationships, 18 participants who work with Innu health data across federal, provincial and Innu jurisdictions were interviewed and participated in group discussions to produce rich qualitative data on the subject. The research plan was led by the First Nations.

Participants identified that size and organisation matter to data governance, and novel partnerships must be considered to achieve the economies of scale necessary for infrastructure. Public health data have multiple custodians and require governance across multiple jurisdictions. Creating a round table (a space for dialogue among equals) to guide the appropriate collection, use and reporting of locally relevant public health data has emerged as an actionable recommendation. In this model, public health data were viewed as co-created by all parties, while Innu led analysis and interpretation. Barriers to data governance included the complexity of accessing data, lack of space to meet as equals, lack of common goals, mistrust and racism. Facilitators included the recognised need for an adequately resourced Innu Health Data Office, communication, trust and good relationships.

For Innu, data governance advances self-determination, potentially redressing the current inequitable distribution of power in public health planning. Describing the challenges Innu face in operationalising public health data governance and strategies to overcome them may be generalisable to other Indigenous Nations attempting to do the same, especially those with small populations.