Transcript – Video with Dr. Macaulay – Show me the Evidence (Spring 2013, Volume 1, Issue 4)

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Equal Partners: A community-led effort to control type 2 diabetes

In the mid-1980s, residents of the Kahnawake Mohawk Territory began to experience a dramatic rise in type 2 diabetes.

Dr. Ann C. Macaulay
McGill University

Dr. Ann C. Macaulay: You go into the grade 1 classroom and you ask children to put up their hands if they have somebody in the family with type 2 diabetes, almost everybody puts their hands up. That's an indication of the impact.

The community approached Dr. Macaulay and the late Dr. Louis T. Montour to help address the problem.

Dr. Ann C. Macaulay: We realized that the community was asking a very significant question, and we set out to put together a team that we felt could put together a research project.

The Kahnawake Schools Diabetes Prevention Project (KSDPP) has since become a model of community-led health research.

Alex McComber
KSDPP Community Advisory Board member and researcher

Alex McComber: I think what was particularly important for me was, and still is, our outlook as Indigenous Peoples on the future generations, on Seven Generations ahead, on our grandchildren and our children and their health.

From the beginning, KSDPP was shaped by a Community Advisory Board consisting of Kahnawake residents.

Dr. Ann C. Macaulay: I think one of the successes of KSDPP is we've been guided by community all the time. The Community Advisory Board has been the key to the success of KSDPP. There's no question about it.

When the project began, there was very little information on how to conduct a successful community-led research project.

Dr. Ann C. Macaulay: We were one of the few projects, back in the 1990s, who had developed this detailed code of research ethics. That in turn inspired other groups to either use or adapt the code of research ethics that we'd developed inside KSDPP.

As KSDPP evolved, other key ingredients for successful collaboration began to emerge.

Alex McComber: The key ingredient is consultation, honest consultation with community members, with community organizations, and emphasizing the equal partnership that needs to exist in order for that to work.

Alex McComber: It's important that we make no assumptions. We have to constantly go back and take a look at the roots, take a look at where the community is coming from and also look at the science. We know that the science has changed over the years. There's been an evolution in understanding as new information comes up, new conclusions are drawn. And so we also have to take that and bring that into the community.

KSDPP has not only improved health awareness in the community, it has also increased research capacity.

Several community members have pursued graduate degrees and joined the KSDPP research team.

Dr. Ann C. Macaulay: So for these new academic graduates, this is a very powerful combination – to have community knowledge, to be grounded in the community, to understand our community, to be part of the community, and then to have scientific training as well. It's a very powerful combination.

KSDPP will continue to serve the needs of Kahnawake.

Alex McComber: The ever-present comment that we have to keep in the back of our mind is from community members who say, "Are we being researched again? Why do we have to continue to be researched?" And we have to be able to answer that in a respectful way and show that any kind of research that's done will continue to be respectful to the community and also contribute to the wellness of the community.

Dr. Ann C. Macaulay: The board has met every month, over potluck lunches now for 18 years, apart from July and August. They're very committed, and I know that will continue. That's where the future will be for KSDPP.