From Commitment to Practice: Advancing Indigenous Data Sovereignty in Health Systems.

Area of Science:

• Public Health and Health Systems Research
• Indigenous Health Equity
• Data Governance and Indigenous Rights

Background:

• Canadian health systems publicly commit to First Nations, Inuit, and Métis data sovereignty and Indigenous-led data governance.
• Organizational uncertainty and fear of misuse create a 'freezing effect,' leading to under-analysis and under-reporting of Indigenous data.
• This data hesitancy perpetuates the invisibility of anti-Indigenous racism and health inequities.

Purpose of the Study:

• To provide an overview of Indigenous data sovereignty within Indigenous rights frameworks, including the UN Declaration on the Rights of Indigenous Peoples.
• To describe practical approaches for enabling the ethical use of Indigenous health data.
• To demonstrate how data can inform quality improvement and monitor health inequities.

Main Methods:

• Overview of Indigenous data sovereignty principles and Indigenous rights frameworks.
• Case study analysis drawing on experiences from Providence Health Care in British Columbia.
• Description of Indigenous-led governance structures, data stewardship, and improved self-identification processes.

Main Results:

• Indigenous-led governance, data stewardship, and enhanced self-identification processes are crucial for ethical data use.
• These elements enable health systems to move beyond data collection to meaningful analysis and action.
• The ethical use of Indigenous health data can effectively monitor inequities and guide quality improvement initiatives.

Conclusions:

• Implementing Indigenous data sovereignty requires overcoming practical challenges and addressing fears of data misuse.
• Indigenous-led governance structures are essential for building trust and ensuring data are used ethically and effectively.
• Prioritizing Indigenous data sovereignty is vital for advancing health equity and combating anti-Indigenous racism within Canadian health systems.