Walking the Path Together: Indigenous Health Data at ICES

Area of Science:

• Health Services Research
• Indigenous Health
• Data Governance

Background:

• Indigenous data governance emphasizes community rights to data for health and self-determination.
• Indigenous-led use of Institute for Clinical Evaluative Sciences (ICES) data has fostered partnerships.

Purpose of the Study:

• To describe the establishment of a team at ICES to support community-initiated research.
• To outline the development of unique data governance agreements and processes for Indigenous research.

Main Methods:

• Establishment of a dedicated team at ICES.
• Development of collaborative data governance agreements with Indigenous partners.
• Implementation of processes ensuring joint work between ICES scientists and Indigenous organizations.

Main Results:

• ICES has formed ongoing partnerships with Indigenous organizations and communities.
• A support infrastructure is in place for community-driven research priorities.
• Unique data governance agreements are being developed and utilized.

Conclusions:

• ICES is actively supporting Indigenous data sovereignty and self-determination.
• Collaborative approaches to data governance are crucial for Indigenous-led research.
• Partnerships between ICES and Indigenous communities are strengthening Indigenous health research.