HDRN Canada strengthens commitment to Indigenous Data Sovereignty & reconciliation
HDRN Canada has released a Statement on Truth and Reconciliation, reaffirming its commitment to advancing the rights and data sovereignty of First Nations, Inuit and Métis Peoples through responsible, respectful and community-informed health data research.
“For generations, research involving Indigenous Peoples has too often been conducted on communities rather than with them,” said Dr. Kim McGrail, Scientific Director and CEO of HDRN Canada. “Indigenous communities have not always been meaningfully involved in decisions about research involving their data, nor have they had clear opportunities to benefit from that research. With this statement, we are committing to changing that.”
Indigenous communities have not always been meaningfully involved in decisions about research involving their data, nor have they had clear opportunities to benefit from that research. With this statement, we are committing to changing that. ~ Dr. Kim McGrail
In addition to health information, Indigenous data can include information about identities, knowledges, languages, lands and territories, cultures, bodies, foods, songs, artwork and other aspects of Indigenous life. Often such information has been collected, accessed, used, governed and stored without meaningful community agreement or direction, with significant consequences. Research framed through non-Indigenous perspectives has ignored community priorities and needs, reinforced harmful stereotypes and contributed to stigma and inequities in health and beyond.
“Indigenous Data Sovereignty is rooted in a resurgence of recognition and assertion of the rights over Indigenous identities, knowledges, bodies, languages, cultures, lands, territories and all other forms of data—and this has evolved into practices and policies which govern and protect the assertion of those rights.,” commented Dr. Amanda Fowler-Woods, HDRN Canada’s Indigenous Data Team Lead and Assistant Professor in the Rady Faculty of Health Sciences at the University of Manitoba. “HDRN Canada is committed to working in ways that honours First Nations, Inuit, and Métis data governance.”
Fundamentally, Indigenous Data Sovereignty is fundamentally about rights, relationships and self-determination Dr. McGrail added. “For HDRN Canada, this means recognizing that communities must have a meaningful role in determining how data about them are collected, accessed, governed, interpreted and used. Our responsibility is to listen, learn and create the conditions for Indigenous leadership.”
HDRN Canada’s commitment is rooted in reconciliation and recognizes that responsible health data research must respect Indigenous rights, knowledge systems, governance and self-determination. The organization is committed to supporting Indigenous-led approaches to health data research and, where invited, Indigenous-led Data Sovereignty and Data Governance approaches as defined by First Nations, Inuit and Métis Peoples. This includes fostering respectful, reciprocal and long-term relationships with Indigenous communities, organizations and researchers, while strengthening data infrastructure and governance practices that uphold Indigenous rights.
Listening, learning & unlearning
HDRN Canada recognizes that reconciliation is an ongoing journey rather than a destination. Its work to date has focused on learning and unlearning, strengthening relationships and examining how its own policies and practices can better support Indigenous Data Sovereignty. A key initiative is supporting the development of an independent and inclusive community of First Nations, Inuit and Métis partners with expertise in Indigenous Data Sovereignty and Data Governance. The community will create opportunities for dialogue and action in Canada and with international Indigenous partners.
“We know that meaningful progress cannot happen without relationships, accountability and a willingness to change,” said Dr. McGrail. “This work requires ongoing examination of our assumptions and practices, learning from Indigenous partners and making space for Indigenous leadership. We see this commitment as part of our responsibility to contribute to research that advances health equity while respecting Indigenous rights and self-determination.”
Next steps for HDRN Canada include embedding Indigenous Data Sovereignty principles within the network’s implementation of the Five Safes Framework, expanding Indigenous-led Data Services initiatives, and sharing guidance on Indigenous Data Sovereignty. The organization will also assess its work against relevant calls to action and recommendations toward reconciliation, including those in the Truth and Reconciliation Commission of Canada’s Calls to Action, the final report of the National Inquiry into Missing and Murdered Indigenous Women and Girls, the In Plain Sight report, and the United Nations Declaration on the Rights of Indigenous Peoples.
Read and share HDRN Canada’s Statement on Truth and Reconciliation.