From subjects to leaders: Indigenous communities in Kahnawà:ke driving their own health research

The Indigenous Health Research Summit in Kahnawà:ke is highlighting how communities are taking the lead in shaping research, by Indigenous people, for Indigenous people, to build healthier futures for the next generations.

The gathering also marks 30 years of the Kahnawà:ke Schools Diabetes Prevention Project, known as KSDPP.

The program began in 1994 after community elders raised concerns about rising rates of Type 2 diabetes. Since then, KSDPP has promoted healthy, active lifestyles for children while weaving together Kanien’kehá:ka values with modern health science.

Over the decades, the program has built bridges between researchers, educators and Kahnawà:keró:non, creating one of the first Indigenous community Codes of Research Ethics, a framework that has since been adapted by other First Nations and Inuit communities.

“People from the community have the knowledge. They are the experts in the health and wellness of the community and of the future,” said Alex McComber, community advisor with KSDPP and associate professor in McGill University’s department of family medicine.

This week’s summit brought together researchers, youth and community leaders from across Quebec and beyond.

Treena Delormier, KSDPP’s scientific director, said the summit reflects a shift away from the historic model of research, where “academic researchers held the control and Indigenous peoples were just the subjects.”

Leila Qashu, another researcher involved, said in the past, outside academics often entered communities with their own topics, extracted data, and never returned to share results. “People would not even know why they were being asked for samples and things,” she said.

Now, Indigenous researchers are creating their own ethical frameworks, rooted in community values and priorities.

Topics presented at the summit ranged from cultural safety in health care, to youth-led water research, to traditional dyeing and weaving practices.

McComber said he hopes this community-driven approach will help bridge worlds. “We want Western science to recognize the validity and the strength of Indigenous research,” he said. “In fact, this is where the answers are to most of the problems that we’re facing in these contemporary times.”

Delormier added that Indigenous-led research is not only about health outcomes, but also about self-determination. “It’s about bringing the ways of Indigenous people into the mix, and ensuring that research reflects who we are,” she said.

Organizers say the summit was also a response to calls from Indigenous health researchers across Quebec who wanted a space to gather, share knowledge and strengthen relationships.