Recruiting lay members? Think outside the box
Consider professional and special interest groups
Too often, an IRB doesn’t take the time or make it a priority to recruit and educate community members who can offer value to the IRB and its mission of improving human subjects research protection.
Or perhaps an IRB has a high turnover of community members and finds it difficult to retain committed board members for the nonscientific role.
In any event, the recruitment and education of community members can be successful if IRBs take a closer look at novel ways to find and train people who will contribute through their affiliation with the community in which a researcher finds study subjects.
Experts offer these suggestions on how to recruit and retain community IRB members:
1. Think outside the box when looking for community representatives. Besides recruiting IRB members from groups that represent a particular research population, IRBs also might find members in some organizations that are off the beaten path.
For example, at one IRB, there is a member who meets weekly with various community groups, developing a long-term relationship that sometimes results in recommendations for community members, says 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.
Also, a Women’s Hadassah organization, local chapters of the AARP, veterans groups, and equal employment opportunity offices might be able to provide the names of potential IRB members, suggests Priscilla Craig, health science specialist with the Department of Veterans Affairs Office of Research Oversight in Washington, DC.
Naturally, veterans’ organizations are a big resource for IRBs at the Department of Veterans Affairs, but there are other good possibilities, too, she notes.
Some IRBs might have local Native American groups and minority groups from which they can recruit members. Others may look to professional societies, including groups representing lawyers, teachers, or journalists.
"One of the things I have done is go to the local bar association to find an up-and-coming attorney who will serve," Bernhardt says. "The important thing is to start by developing a job description that lays out clearly the responsibilities and the commitment; and in order to do that, one of the things you need to do is produce a list of hoped-for qualifications."
Some of the qualities that are most desirable in an IRB’s community representative are having an inner strength, which would mean that someone is not intimidated by doctorate degrees; willingness to display ignorance and to ask questions; displaying the ability to articulate and analyze; and having the time to prepare for meetings, Bernhardt says.
Although finding members who represent particular communities may pose some challenges, it’s a good idea, Bernhardt and Craig say.
"If you have a particular focus in your research — like Alzheimer’s research, for example — then you will want a community member, but it also would be a good idea to have someone who has a grasp of the science involved," Craig says.
Such people could be found in the local Alzheimer’s support group, perhaps, she adds.
Similar resources can be found in local multiple sclerosis societies and other organizations that exist to help people affected by a particular disease.
"All you have to do is go to the phone book sometimes, but there is a fear of finding someone who is too vocal and who would obstruct the process of the IRB," Craig says. "That’s like a hidden fear, but it’s worth mentioning. And when people find out that it’s not the case and people are motivated by the greater good, then they’re much less reticent to contact them."
Other sources of community IRB members include the following:
- North American Treatment Advocacy Forum;
- Women Alive;
- Coalitions of volunteer groups;
- local community business groups.
Prepare members through education
2. Provide better-than-minimal education and training. "IRBs don’t always provide the indoctrination or orientation that community members need," Craig says. "They don’t have the education they need to function as an equal member of the IRB."
Community members need education, partnering, and mentoring, says Susan Rose, executive director of the Office for Protection of Research Subjects at the University of Southern California in Los Angeles.
One area that especially is lacking is a continuing education program for IRB members and particularly for community members, Bernhardt says.
A small number of enlightened IRBs will send their community members to IRB and human subjects research conferences and meetings, Rose says.
For example, the University of Southern California pays for its community members to attend the annual Public Responsibility In Medicine and Research conference, she notes.
During a new member’s orientation period, it is a good idea to have someone affiliated with the IRB sit down with the community member and describe the job description of serving on an IRB, Bernhardt suggests.
"Make sure there’s a real understanding of the responsibilities and obligations attached to the appointment," she advises. "As far as I’m concerned, continuing education starts with the initial get-together of the candidate."
Other education sessions might include an all-day training session that covers the three R’s — roles, responsibilities, and relationships — of IRBs, she says.
The continuing education training should be formally developed and include funding for sending members to outside training workshops, such as ARENA’s IRB 101, Bernhardt suggests.
"Another thing would be to use the films that were developed by the Office for Protection from Research Risks, the predecessor of OHRP," says Bernhardt.
Also, someone on the IRB staff should ask the new member what he or she has experienced and whether they feel prepared to do their assignment.
"This is very rarely done," Bernhardt notes. "And yet it could be a source of improvement."
Some IRBs provide free e-mail services to community members who don’t have personal computers, and still others provide laptop computers to IRB members, Craig notes.
"If you have the money to do that, then that’s fine; but there are a lot of ways to facilitate their education," she says. "Mentoring is one way."
Mentoring also isn’t done enough, and this is a very good way to introduce members to the IRB culture, Bernhardt adds.
For instance, another member of the IRB can work with new community members to review the informed consent process and show them what to look for in informed consent documents, Craig suggests.
Community members also might need to be taught how to decipher medical language in the more technical informed consent documents used in biomedical research involving cancer, for instance, she says.
Simpler education ideas include providing community members with an IRB orientation folder or package, giving them access to on-line web sites and education programs, including the Office for Human Research Protection training, Craig says.