Traditional scientific research has often been criticized for operating like a one-way street. Researchers frequently use communities solely as information resources from which to gather data and knowledge to benefit their work, but leave participants to gain little or nothing from the process.
In response, a new community-based participatory research model has cropped up, and is being employed by the Haida Gwaii Diabetes Project in British Columbia. The First Nations diabetes program aims to develop culturally sensitive approaches to preventing and managing diabetes for aboriginal residents, and ensures that both community members and academics contribute to and benefit from the research.
In this positive working partnership, members of the academic research team gain insight into aboriginal views of health and disease, and residents participate in designing services that will improve health in their community. Community-based models are meant to both facilitate an exchange of knowledge, and to directly effect social change.
This framework of reciprocity challenges the prevailing notion that knowledge gained from research belongs to the researcher and scientific world, and emphasizes instead that researchers are borrowing knowledge. This model encourages the notion that data belongs to community members, who decide what to do with records of interviews and focus group discussions, and whether or not to keep them accessible to the public. Participants provide a human context for the researchers’ number-crunching, and the task of interpreting results is shared between the two groups.
Carol Herbert, dean of the Schulich School of Medicine at the University of Western Ontario, conducts participatory research with Canadian aboriginal communities and has taught the practice extensively. According to her, the sharing process is essential to the analysis.
“It isn’t good enough to say, ‘I’ll publish in peer-reviewed literature in my little esoteric area and other researchers like me, all 10 of us will read it,’” Herbert said.
Extra steps are necessary to make sure data is accessible to everyone. Strategies include hosting open community forums and using local media to deliver the information to the communities involved.
Herbert also urges researchers to not underestimate the power of their position within a community and to respect a participant’s limitations.
“If someone says they just don’t want to talk about something, I accept that…. The most important piece around power differentials is to recognize that they always exist and it is difficult to stay in a balanced position…especially when there are systemic factors that mitigate against that balance,” she said.
Critics argue, however, that this participatory methodology is too time-intensive. Herbert acknowledged that it can limit certain types of research.
“In an academic setting, time is an enemy,” she said.
But Herbert believes some areas of inquiry need to use this approach: “It’s about getting a good outcome from a scientific point of view, as well as about the ethics and morality of it.”
But should researchers take a more active role regarding the issues they explore academically, or does community-based participatory research make it hard to distinguish a researcher from an advocate?
Herbert herself has taken on certain advocacy roles in areas such as women’s health, but is ambivalent about encouraging others to do so. Advocacy work might make it difficult to maintain objectivity, and could thereby harm a researcher’s work or damage their credibility. Instead, she encourages researchers to accept their limitations.
“I can’t be an advocate in all the areas that I’ve done research in. I just couldn’t; I’d paralyze myself,” she said. “It’s okay not to take something on as your life’s cause at the end of your research project.”
—with files from Nikki Bozinoff
Listen to the original interview on CKUT’s October 20 show of “Health on Earth.” secure.ckut.ca/cgi-bin/ckut-grid.pl?action=showaudio&show=tuesday,20:30