Ethics office supports community researchers

Ontario organization focuses on social science studies

Seeing a need for ethics guidance for local groups attempting to conduct community-based research, an organization in Kitchener, Ontario, has created an independent Community Research Ethics Office (CREO).

The recently launched CREO, housed in an existing community research center, provides guidance for investigators planning projects, as well as online resources and its own research ethics board (REB, the equivalent of a U.S. IRB) to review proposals as needed.

Norah Love, MA, coordinator of the CREO, says it came in response to requests from local community researchers. In 2008, the Centre for Community Based Research, which has served the area for nearly 20 years, invited researchers to talk about the challenges they faced.

"The overwhelming response from that meeting was that there is a need for more support in our region for community-based research," Love says. The center launched a needs assessment and feasibility study and brought back a proposal for the formation of a CREO in 2010.

Researchers assisted by the CREO will include those from not-for-profit organizations or independent consultants conducting social science research. Projects also can include activities not always seen as research, such as program evaluations and needs assessments. Bill Marr, PhD, chairman of the REB at nearby Wilfrid Laurier University and now the CREO's REB chairman, says Canadian regulations do not cover these types of activities.

"Although there is privacy legislation in Canada, there's really not legislation either at the federal or provincial level that covers what you and I would understand as the ethical norms of collecting information from people," Marr says.

Unaffiliated researchers

In Canada, research conducted through an institution that receives funding from government agencies would require the use of an established REB. But the CREO notes that research is increasingly being conducted outside of these types of institutions.

Unaffiliated groups say they want support on ethical issues without having to partner with a university or other institution to get it, Love says.

"People want to have review of a project for their own quality assurance purposes," she says. "They want partnerships for the sake of partnerships as opposed to partnerships for the sake of having a review."

The CREO provides support in a number of ways, depending upon the researcher's needs. A consultation service can help identify potential ethical issues with a project and guide the researcher in addressing them. The CREO can provide training sessions or workshops for researchers and community members involved in studies. If the researcher wishes, he or she can submit a proposal to the CREO REB for a formal review. And a website (www.communityresearchethics.com) provides links to useful information about ethical issues.

"One thing that was quite evident from community forums was that organizations wanted a website where they could go and find information about things like how to undertake community-based research, how to do it ethically," Marr says.

Love says there are many sets of guidelines available, but no complete agreement as to how to handle these issues.

"There's no one set of guidelines they can go to to learn how to train community researchers, for example," she says. "They have to sift through so many resources and they don't have a clear understanding of what the best practices are. (Researchers) are hoping to have a place or a group in the community that can help be a consistent voice for community-based research and how to conduct it."

In addition to Marr, there are 10 other members of the volunteer REB, including those with experience as researchers, former participants and those with REB experience. "We wanted to have a multidisciplinary mix," he says.

Researching the research needs

A major strength of the CREO's approach is that it did its own community-based research before going forward with a plan, Love says. She says other communities in the U.S. and Canada who are interested in the idea should not skip those important steps of engaging the community to be served and listening to their concerns and suggestions upfront.

"We really did model community-based research in the development of a community research ethics office," she says. "The idea is that if we're developing something collaboratively, then hopefully it will be of use to the people who developed it in the first place."

One challenge for the office will be funding. Its pilot year has been funded by a grant from an Ontario government foundation, but Love and Marr are unsure where continuing funding will come from.