Much of the history of community-engaged research involves academic researchers approaching communities with pre-formulated research plans and seeking community collaboration.
“But increasingly, many heavily-researched communities are turning the tables, refusing to be the passive recipients of well-intentioned academic partnerships,” says Scott Neufeld.
The Community Psychology lecturer in Brock’s Department of Psychology is part of a McGill University-led research team investigating how communities are taking an active, empowered role in the research process.
“We’re interested in what we call ‘community governance’ of research, which is fundamentally different from the more common notion of ‘community engagement’ within research,” says Neufeld.
“That’s a really important distinction,” he says. “We’re interested in ways that communities and community members themselves have claimed their own power and said, ‘Here are the terms under which we are going to engage with researchers.’”
To that end, Neufeld and his colleagues are asking community groups that have had experience with community governance in research to fill out the short survey Seeking Wisdom: Community Research Governance Project.
Neufeld gives the example of Six Nations of the Grand River, which has its own ethics board outlining ethical practices and protocols for how research should be conducted in their territory.
While researchers are required to submit a protocol to the Six Nations ethics board before proceeding with research, this isn’t the case for non-Indigenous communities, who lack sovereignty and a right to self-determination. But many of them are also seeking a voice in research governance, says Neufeld.
Other examples of community governance include: developing community guidelines for researchers; reviewing research proposals from a community perspective; choosing which research projects will be most valuable for a community; or identifying ethical issues related to proposed research projects.
Jayne Morrish, Knowledge Mobilization Officer with Brock’s Lifespan Development Research Institute, says the survey is a great opportunity for local groups to “contribute rich material to this broader research area.”
“I think Niagara has some really unique examples of community-engaged research,” she says. “This survey will help draw out the work of these local community members.”
Gathering community groups’ governance experiences through the survey and a literature review is the first phase of the research, which is being funded by the Social Sciences and Humanities Research Council of Canada.
The second phase, to begin next year, will consist of in-depth interviews with experts in, and those having experience with, issues involving community research ethics governance.
The final stage will analyze the findings and share them with community groups who might be interested in developing their own strategies for community involvement in research ethics governance.
“The project fundamentally involves questioning assumptions regarding expertise,” says Phoebe Friesen, Assistant Professor in the Biomedical Ethics Unit and Department of Social Studies of Medicine at McGill University, who is leading the study.
“Particularly with regards to ethics expertise — a lot of what we’re seeing so far offers strong evidence that in many cases, communities themselves are better placed than institutional research ethics boards to offer guidance to researchers on what ethical research involving them will look like,” she says.
“We’re trying to get a sense of the many, many different strategies communities of various sorts have used in order to claim agency within research governance,” as well as the benefits and drawbacks of these various approaches, says Friesen.
She says questions arising in the project include: Which communities ought to have the right to govern research that involves and impacts them? What justifies such a right? How can researchers ensure communities directly benefit from research involving them? Who should own the data being collected in community research?