Building an Indigenous health data cooperative
The challenge
For Indigenous communities in Tkaronto (the traditional Mohawk word for Toronto, Canada), the question of who controls health data is inseparable from a longer history of data colonialism, where data has been extracted in ways did not benefit Indigenous people, and in many ways, harm them. That history has left a deep legacy of mistrust between communities and institutions that hold their data, and any governance initiative must contend with that first.
Building trust between communities and institutions takes time and cannot be rushed, particularly where those institutions have historically extracted data without reciprocal benefit, and where community members have seen research serve outside interests rather than their own. Community-led data governance also requires an investment in building capacity: data literacy, technical infrastructure, and the processes through which communities can exercise agency and meaningful collective voice, without dependencies on external vendors. And the model needs to be financially sustainable, with benefits reinvested into community health rather than captured or controlled by external actors.
Our partner
The Tkaronto Indigenous Health Data Cooperative represents a vision of Indigenous-led health innovation that goes to the heart of what Indigenous data sovereignty and rights can actually mean in practice, particularly as it relates to a diverse urban Indigenous community, like Toronto, where there are Indigenous peoples from across Turtle Island (North America). The cooperative would enable the community to shape research, direct resources, and build data infrastructure that reflects Indigenous values and ways of knowing including Indigenous-informed frameworks like OCAP® (Ownership, Control, Access, and Possession) and CARE (Collective benefit, Authority to control, Responsibility, and Ethics) principles.