Such efforts to protect data privacy go beyond the abilities of the technology involved to also encompass the design process. Some Indigenous communities have created codes of use that people must follow to get access to community data. And most tech platforms created by or with an Indigenous community follow that group’s specific data principles. Āhau, for example, adheres to the Te Mana Raraunga principles of Māori data sovereignty. These include giving Māori communities authority over their information and acknowledging the relationships they have with it; recognizing the obligations that come with managing data; ensuring information is used for the collective benefit of communities; practicing reciprocity in terms of respect and consent; and exercising guardianship when accessing and using data. Meanwhile Our Data Indigenous is committed to the First Nations principles of ownership, control, access and possession (OCAP). “First Nations communities are setting their own agenda in terms of what kinds of information they want to collect,” especially around health and well-being, economic development, and cultural and language revitalization, among others, Lorenz says. “Even when giving surveys, they’re practicing and honoring local protocols of community interaction.”

Back to the basics: Identifying and addressing underlying challenges in achieving high quality and relevant health statistics for indigenous populations in Canada

Indigenous Data Sovereignty