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Lay members often leave when they feel excluded
Empower and keep community members
Attend any major IRB conference and one common complaint is that IRBs are having difficulty recruiting and retaining community members.
Usually, when they do find someone to serve on the board as a community representative, it’s done informally as an ask-somebody-to-ask-somebody process, notes Priscilla Craig, health science specialist with the Department of Veterans Affairs (VA) Office of Research Oversight in Washington, DC.
"It’s a word-of-mouth search for someone who fits the criteria, and a lot of times they tried to combine the functions by having a member who is both an unaffiliated member and nonscientific member," Craig says. "That’s not always a good idea."
It’s difficult for one IRB member to fulfill two roles in a professional capacity, Craig adds.
To prevent this type of shortcut in recruiting IRB members, the VA created new avenues for finding and empowering community members, including emphasizing the possibilities of recruiting from advocacy and community groups, Craig reports.
Convincing IRB members that these types of groups are good potential sources of community members is a bit challenging because of existing stereotypes, Craig says.
"They hear word activist’ and think they might get someone on the IRB who is difficult to work with," Craig says. "But that’s not the case with most professional organizations that exist."
IRB members should think about the community member as someone who adds an essential perspective to the protocol review process, and, as such, they should make an effort to find community members who have personal experience in areas that are commonly being studied at a particular institution, says Susan Rose, executive director of the Office for Protection of Research Subjects at the University of Southern California in Los Angeles.
"One of the IRBs for which I had oversight responsibility had lots of drug addiction studies, and when we reviewed the IRB, we found they had no community members or even consultants who had been a drug addict," she recalls. "The IRB said it wasn’t possible to find someone with that experience, but it took me four hours to find a group that was willing to find someone [who was a former addict] who could be a consultant or community member."
Obviously, IRBs can’t have community members for every topic the IRB might review, but if there are significant number of protocols in one area of research, then it’s a good idea to find someone who could represent that community, Rose notes.
Likewise, IRBs should attempt to recruit community members who are representative of a particular community’s ethnic, socioeconomic, or cultural diversity, suggests David Bernhardt, IRB chair of Public-Private Ventures in Philadelphia and San Francisco, and the interim chair of the University of Pennsylvania IRB. He also is a member of Networking IRB at Albert Einstein Healthcare Network, Albert Einstein Medical Center in Philadelphia.
Finding such people could be as simple a matter as asking staff at an institution to recommend someone who might be interested in serving on the IRB, he says.
Make community members feel welcome
Retaining community members can be as simple as showing them respect through actions and policies, but this ideal sometimes is not met. Too often, IRBs treat the community member as a guest or second-class member of the board, the experts say.
There is the hierarchy created by the use of titles and assigning the scientific members protocols to read, but not having the community member be a primary reviewer, Rose says.
At one IRB where the institution has deliberately worked to make certain each member feels as though he or she is on equal footing, everyone is called by his or her first name at the meetings, she notes.
Likewise, community members should be made primary reviewers, and their concerns about a protocol at a board meeting should be respected, Rose adds.
When a community member attends a first meeting, the board should introduce him or her with a presentation about this person’s background, rather than just a perfunctory "we’re so happy to have this member" statement, Bernhardt says.
Also, the IRB should provide the new member with a detailed list of the members of the IRB, including their telephone numbers in case the person has questions, Bernhardt says.
There is even an on-line source of information for community IRB members at this web site: www.orau.gov/communityirb/.
During IRB meetings, it’s important for the other board members to listen respectfully to the community member’s concerns and not through physical or verbal attitude make this person feel that he or she is a hindrance to the process or wasting people’s time, Craig notes.
"The community member’s role is to bring everybody back to reality and to point out that certain things may or may not be a good idea," she says. "The dynamics are that the community members should be equal and assertive and be listened to when they present objections to certain procedures or tests that cause them discomfort — that’s their role."