Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis...

Area of Science:

• Public Health
• Indigenous Studies
• Data Governance

Background:

• Indigenous rights to self-determination and data sovereignty are crucial for Indigenous-led public health initiatives.
• Adequate resources, time, education, and planning are essential for effective Indigenous data governance.
• Tuberculosis prevention and care efforts can be significantly advanced through Indigenous-led approaches.

Purpose of the Study:

• To share experiences and lessons learned in developing and implementing data governance agreements with Indigenous communities.
• To define a process for creating an equitable decision-making space for public health research and programming.
• To inform policy for nation-to-nation public health relationships.

Main Methods:

• Collaborative development of data governance agreements with First Nations and Métis communities in Canada.
• Establishing a decision space involving researchers, government stakeholders, and Indigenous partners.
• Focusing on tuberculosis prevention and care as a case study.

Main Results:

• Data governance agreements facilitated Indigenous-led strategic planning and decision-making.
• The established decision space ensured equitable information sharing among all partners.
• The process supported co-development of public health interventions.

Conclusions:

• Respecting Indigenous data sovereignty and governance is key to successful public health collaborations.
• Data governance agreements can empower Indigenous communities in public health research and programming.
• This model has broad implications for addressing various public health concerns and informing Indigenous-government relations.