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IRBs improve recruitment of community members
Boards should be diverse to represent community
Research institutions are becoming more sophisticated in their recruitment and retention of community IRB members, says Marjorie Speers, PhD, executive director of the Association for the Accreditation of Human Research Protection Programs (AAHRPP).
The IRBs Speers sees applying for accreditation are doing more than simply trying to find someone unaffiliated with their institutions.
"I think we do a much better job today in selecting community members than we did previously," Speers says. "I think before, it was find anybody sort of outside the university or hospital to sit on the IRB. Whereas now, there are a lot of sharp people who do know about research and understand the importance of it and they are willing to sit on an IRB."
Finding those people takes creativity and a willingness to experiment, says Susan L. Rose, PhD, executive director of the Office for the Protection of Research Subjects at the University of Southern California in Los Angeles.
Rose particularly looks for members who have specific experience with a population that is being studied in protocols that go before the IRB.
For example, in a previous position, she learned that researchers with her institution were doing studies involving drug addicts, so she went looking for community IRB members who could speak to those issues.
"It took me maybe four hours on the telephone but I found a group made up of ex-drug users that worked to make sure that no harm came to [addicts]," Rose says.
At USC, researchers do a large number of gang-related studies, so one of the community IRB members recruited was an activist who mentors high school students involved in gangs.
One good source of community members are subjects from previous studies, she says.
"I try to get some of the researchers who are sensitive to keep their eyes peeled for some of their subjects who might be interested," Rose says.
Speers says it's important to have a critical mass of community members on an individual board to give members the moral support they need to voice their opinions. At USC, for example, Rose says that there are 3-4 community members on each of the various boards.
"I actually think that this is an area where we've seen real change," Speers says. "Institutions will have more than one community member or unaffiliated member on the IRB. They may have several. They'll have individuals who represent different perspectives, particularly different ethnic groups, if the IRB is reviewing research that is conducted among different ethnic groups."
Another practice that can help new community members feel empowered is to assign them mentors, says Urvi Patel, MS, a psychology graduate student who serves as an IRB student mentor at USC.
"We really push this idea of veteran community IRB members mentoring newbies," Patel says. "Even just having a phone number to call at that point, when you're new and everything's overwhelming, goes a long way."
Speer says the culture of IRBs has been changing over the past few years, as new chairmen come on board, encouraging a more participatory style during board meetings.
"They're involving others, and making sure everybody has a voice in the discussion," she says.
Speer notes that federal regulations do not require a community member or non-affiliated member to be present to have a quorum for an IRB meeting—they require only that a non-scientist be present.
"But in our standards, we really want the person with the local perspective to be there," she says. "So I think that the accredited organizations are very concerned about the diversity of opinion and involving the community in the decision-making process."
Speers says that one area all IRBs should be vigilant about is trying to recruit an ever-more diverse group of community members. She notes that in some major metropolitan areas, there may be 100 languages being spoken.
"Not that you'd want all 100 languages represented, but you can probably never have too many community members when you're in such a diverse community," she says. "We're always striving with the IRBs to make them more diverse, more inclusive of the communities where they're conducting the research."