Indigenous Peoples' Data During COVID-19: From External to Internal

Area of Science:

• Public Health
• Data Science
• Indigenous Studies

Background:

• Global disease trackers demonstrate the critical role of data in managing the COVID-19 pandemic.
• Data are essential for informed decision-making, strategic planning, effective mitigation, robust surveillance, and equitable response monitoring.
• Concerns exist regarding both the availability and suppression of COVID-19 data, with potential for both benefit and harm due to historical and ongoing systemic racism and exclusion.

Purpose of the Study:

• To examine the impact of systemic racism and marginalization on the quality, quantity, accessibility, and utility of Indigenous Peoples' COVID-19 data.
• To advocate for collaborative data governance models that prioritize Indigenous Peoples' rights and self-determination.

Main Methods:

• Qualitative analysis of existing literature and policy documents concerning Indigenous data sovereignty and COVID-19 responses.
• Review of case studies illustrating challenges and successes in Indigenous data collection and use.

Main Results:

• Systemic policies rooted in racism and marginalization have created significant limitations in Indigenous Peoples' COVID-19 data.
• Publicly available data, while beneficial, can also pose risks if not handled with sensitivity to historical and ongoing harms.
• Effective public health responses require data that is collected, managed, and used according to Indigenous Peoples' own terms and protocols.

Conclusions:

• Collaboration between governments, institutions, and Indigenous Peoples is paramount for improving the use of COVID-19 data.
• Centering Indigenous data sovereignty is crucial for achieving equitable and effective public health outcomes.
• Future data initiatives must be co-designed and co-implemented with Indigenous communities to address historical inequities and build trust.