By Nick Stewart
Having been the subject of countless studies over the years, First Nation communities on Manitoulin Island are working with researchers at the Northern Ontario School of Medicine to develop a collaborative approach to health research.
“Communities are in the process of taking back control of research initiatives,” says Dr. Marion Maar, assistant professor of medical anthropology.
“Instead of us going in there and saying, ‘We’re the Northern Ontario School of Medicine, we know what kind of research you should do,’ we’re working with communities as equal partners.”
Maar is working with First Nation communities to develop research that will help to improve community health, rather than putting them under the proverbial microscope without asking them for input.
Currently, she’s heading up a project to examine the rise of diabetes within increasingly younger segments of First Nation populations. The aim is determine what can be done within their respective communities and within the health care system to lessen its impact.
The $25,000 project is being funded by the Indigenous Health Research Development Program, which is funded by the Canadian Institutes for Health Research. Having begun in November of last year, the project is still in its consultation phase and seeks to develop what Maar refers to as a holistic understanding of diabetes in these First Nations communities.
“First Nations’ understanding of ‘holistic’ incorporates the physical, mental, emotional and spiritual perspectives of health,” she says. “People believe that all of these four quadrants need to be addressed in order to come up with viable solutions, and with this particular project, we’re in the early stages.”
As an example, Maar explains that within this holistic understanding of diabetes, the disease has a spiritual component. Traditional Aboriginal spiritual beliefs encourage a balance in lifestyle, a concept which has also found its way into mainstream health promotion and diabetes prevention approaches. The erosion of traditional spirituality in many First Nation communities is therefore a concern that is also intertwined with diabetes prevention.
Maar says this form of participatory or applied research is much more effective than dated methods, which find scientists and research assistants dictating both the problem and the solution to these First Nations communities.
“In the most effective interventions, Aboriginal communities and researchers are equal partners,” says Maar. “I truly do respect that Aboriginal people have a deep understanding of their communities, and they will know what works, and what kind of questions we need to research.”
Typical data gathering methods must also be re-evaluated in order to conduct meaningful research in First Nations communities, says Maar.
Rather than approaching the community with long questionnaires, as is the normal way of moving forward with such research, First Nations have a different culture that requires flexible methods. For example, one should ideally develop a relationship with the locale, especially with elected band council elders and health care staff, prior to beginning any kind of scientific analysis within the community.
This same approach must be taken to gain consent to participate in research. Normally, this is a matter of individual approval, however, First Nations view it as a matter which should also be decided by community consensus.
Past disparity in research has created a sort of “research fatigue” amongst many First Nations people, she says. As an example, she points to two Manitoulin communities, who in 2000 shut down at least two research projects deemed to be conducted unacceptably, despite having received clearance from hospital or university-based research ethics boards.
Maar’s involvement with the Manitoulin Research Review Committee, one of the only First Nations research ethics boards in the country, enables her to learn about and resolve this disconnect between researcher and subject.
“You need to work with people from the research question all the way to the solutions, and not just say, ‘If you want to see the results of this study, read about it in a scientific journal’,” she says. “This type of research requires more time and committment, but the impact is worth the effort.”
Throughout the years, she says, blood samples have been collected and shipped, tested and stored, without a transparent process that involves First Nations.
To the dismay of many community members, much of this has been conducted within the context of a researcher-subject relationship, rather than as a collaboration between the two parties.
This, too, is something that Maar says needs to change and the change needs to be supported by universities.
“The Northern Ontario School of Medicine has an excellent opportunity to lead in this area by supporting its researchers to engage in participatory research with First Nations,” she says. “We are off to an excellent start!”
