Integrating Indigenous Data Sovereignty Principles Into Learning Health Systems: Survey of Canadian PBRLNs and...

Area of Science:

• Health Services Research
• Indigenous Studies
• Data Governance

Background:

• Canadian practice-based research and learning networks (PBRLNs) are vital for healthcare improvement.
• Implementing Indigenous data sovereignty is increasingly recognized as essential for ethical research.
• Understanding current data governance practices within PBRLNs is necessary to integrate Indigenous data sovereignty.

Purpose of the Study:

• To assess current data governance principles in Canadian PBRLNs.
• To explore the application of Indigenous data sovereignty frameworks within these networks.
• To identify opportunities and challenges in this integration.

Main Methods:

• Cross-sectional survey of Canadian PBRLN leaders.
• Summary statistics and content analysis of survey responses.
• Literature scan to identify and synthesize Indigenous data sovereignty frameworks.

Main Results:

• Eleven of 15 PBRLN leaders participated.
• Key activities identified: building knowledge, dedicating resources, and understanding advancement pathways for Indigenous data sovereignty.
• Nine Indigenous data sovereignty frameworks were identified, highlighting principles like relationship building, collective benefits, respecting Indigenous knowledge, and ethical sustainability.

Conclusions:

• Improving Indigenous data sovereignty knowledge within Canadian PBRLNs is a priority.
• Principles from identified frameworks are relevant and should be applied.
• PBRLNs and learning health systems must adopt place-based, relational practices to support Indigenous reconciliation.