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A Community Effort: Proving the Power of Participatory Research

Diabetes prevention project succeeds when community and researchers work as equal partners

Dr. Ann Macaulay has seen first-hand how type 2 diabetes – which decades ago was a non-factor among Indigenous people² – has become a scourge of First Nations communities.

A general practitioner in the Kahnawake Mohawk Territory on the south shore of the St. Lawrence River since the 1970s, Dr. Macaulay and her colleagues began seeing more and more patients developing the type 2 diabetes and the heart disease, strokes and cardiovascular deterioration that come with it. In the mid-to-late 1980s, Dr. Macaulay and her Mohawk colleague Dr. Louis T. Montour conducted two studies that confirmed their observations. And while they eventually published their results in academic journals, their first commitment was to the people they served.

“The numbers were awful,” says Dr. Macaulay. “We were quite worried about going around with the results that indicated high rates of type 2 diabetes and obesity. Afterwards some of the Elders came to us and asked if we would do something to prevent this disease by focusing on the young. They felt that they were stuck in their lifestyles, but wanted to prevent the youth from carrying the same burden of disease.”

So began the Kahnawake Schools Diabetes Prevention Project (KSDPP). Funded since 1994, it is one of the longest-running community-based participatory research projects in Canada and serves as a model of how to do participatory research right.

What is participatory research?
In participatory research, academic investigators work in full partnership with those who are affected by the issue or who ultimately will use the research results – patients, health professionals, organizations, policy makers and community members, or, in the case of Kahnawake, entire communities. The overriding goal, according to Participatory Research at McGill (PRAM), is to answer important health questions and benefit the partners in the research process, while generating knowledge that also can be applied elsewhere.

Like many First Nations communities, the people of Kahnawake had a history of unsatisfying and sometimes stigmatizing experiences with researchers coming in from beyond their borders to perform research “on” them. A 1987 quote from Dr. Montour says it all: “Outside research teams swooped down from the skies, swarmed all over town, asked nosy questions that were none of their business and then disappeared never to be heard of again.”³

The guiding principle for KSDPP has been to include the community and the researchers as equal partners – even if it meant creating the process as they went along.

“Remember, this was back in the mid-1990s, before all the current ethical guidelines had been developed,” says Dr. Macaulay. “We had to decide, ‘What are the obligations of the researchers to the project? What are the obligations of the community? How are these partners going to work together?’ We became leaders in developing a code of research ethics that combined science with cultural relevance and the respect of the community.”

The community as equal partner

In Kahnawake, the community is a full partner in KSDPP, from concept to completion. Through the volunteer Community Advisory Board, people take part in developing objectives, planning and implementing interventions and evaluations, collecting and interpreting data, reviewing all publications, and disseminating results. At the same time, the community takes responsibility for implementing and enforcing a healthy nutrition policy in schools, increasing physical resources through initiatives such as building recreation paths, and sponsoring social gatherings like fun runs, walking club events and food tasting events that promote a healthy lifestyle.⁴

Photo: Participants at the Echoes of a Proud Nation Powwow in Kahnawake, July 2012

Dr. Macaulay helped assemble a team that adopted the principles of participatory research from the outset. “We had limited expertise in collecting data, so we invited some top-notch researchers from McGill and the University of Montreal to join the team, which was made up of family physicians, the director of the hospital, the director of the education centre and the director of social services in the community.”

One of the first hires was Alex McComber, a former Kahnawake Survival School principal who has worked with the project for much of the past 18 years as its executive director and training co-coordinator.

“The researchers had done a good job of bringing the message of the problem to the community,” says Mr. McComber. “I read the proposal and thought, ‘We need to do this together with the community.’ We sent out invitations to the key stakeholders we identified – phys-ed teachers, school administrators, people from the hospital and the band council, the police, the ambulance service, community services, social services, the youth centre, all of the existing organizations. We had about 75 people attend a full-day meeting and engaged them in dialogue, saying, ‘This is the situation and these are the possible solutions. How do we go about doing this?’ We basically created the activities of the project from there.”

From those stakeholders, the KSDPP Community Advisory Board was assembled – volunteers who meet every month with the researchers and full-time project staff to guide the prevention project as interventions are developed and implemented.

Profile of a Community Advisory Board Member
Amelia Tekwatonti McGregor, a Kahnawake homemaker and school volunteer, was one of the original Community Advisory Board members and remains one today. She had a stake in getting involved: her mother lived with diabetes and her daughter was one of the elementary school children to be tested as part of the project. “Being a stay-at-home mother, you’re always trying to find ways to keep the kids healthy.”

She points to the end-of-school-year Racers for Health event, when schools from other Mohawk communities visit Kahnawake for a series of fun runs, as a particularly popular intervention. KSDPP hosts Sadie’s Walk and Mother’s Day walks, and supports Kahnawake Youth Centre initiatives such as Mohawk Miles, and the Winter Carnival.

“The Community Advisory Board usually supplies healthy soups and sandwiches for the people who join in,” she says. “People like socializing and competing with each other in a friendly way.”

At the two Kahnawake elementary schools, the implementation of ten 30-minute lessons on the themes of nutrition, fitness and lifestyle, and diabetes has been central to the project’s enduring success. KSDPP initially helped train the teachers in delivering the program, which was developed by local school nurses and a nutritionist. The project also promotes school nutrition policies and helps organize school activities such as in-class walking programs and extracurricular events.⁵

“We’ve learned a lot of lessons in terms of keeping things fresh and relevant,” says Mr. McComber.

On the research side, evaluation is also ongoing. Researchers – several of whom are from Kahnawake, received training through KSDPP and have completed master’s and doctoral programs – periodically assess elementary school children on their height and weight, fitness, eating habits, physical activity and TV watching.⁶

KSDPP hasn’t eradicated type 2 diabetes in Kahnawake, but it has helped keep it from running rampant as it has in many Indigenous communities.

“The data show that the incidence decreased from 1986–2003,” says Dr. Macaulay. “The prevalence of type 2 diabetes is increasing across Canada, and the rate of increase in Kahnawake is between that of Canada and Indigenous communities – as opposed to the massive increase in other Indigenous communities.”

Evidence in Action: A model for participatory research

The guiding principle for KSDPP was to treat the community and the researchers as equal partners. “We became leaders in developing a code of research ethics that combined science with cultural relevance and the respect of the community,” says Dr. Macaulay.

One of the project’s greatest successes, says Mr. McComber, is raising awareness. “The awareness of diabetes and the importance of diabetes prevention and healthy lifestyle are there throughout the community. Getting people to make changes: that can be painstakingly slow. It’s very much an individual thing and there are a lot of considerations working against that. But the fact that the recognition is there, that’s a success.”

“One of the key items is to keep scientific rigour, because shoddy research doesn’t benefit anybody. It certainly doesn’t benefit the community.” – Dr. Ann Macaulay

1. Type 2 diabetes mellitus in Canada’s First Nations: status of an epidemic in progress, Canadian Medical Association Journal 163, 5 (2000): 561–66.
2. Health Canada, Diabetes Among Aboriginal (First Nations, Inuit & Métis) People in Canada: The Evidence (2001).
3. Alex M. McComber and Ann C. Macaulay. The Kahnawake School Diabetes Prevention Project: Community Advisory Board & Code of Research Ethics [ PDF (384 KB) - external link ], presentation to cuEXPO (May 2008).
4. Participatory research maximises community and lay involvement, British Medical Journal 319, 7212 (1999): 774–78.
5. Implementing participatory intervention and research in communities: lessons from the Kahnawake Schools Diabetes Prevention Project in Canada, Social Science & Medicine 56, 6 (2003): 1295–1305.
6. Ibid.