Community IRB members can play vital role

Above all, treat them with respect

Ever asked the community members of your IRB whether they feel a part of the committee’s actions? Chances are, they will recite a line more common to Rodney Dangerfield: "I don’t get no respect." That doesn’t have to be the case, say IRB administrators who make an effort at including the community members. In fact, cultivating the relationship with community members could reap rewards down the line, they add.

Surprisingly, you can accomplish this without the biggest motivator: money. "Virtually all of my members are community members. We don’t pay them anything, but they know they are needed," says Leilani S. Price, PhD, IRB administrator at Cottage Health System in Santa Barbara, CA.

Price works as the sole IRB employee in a community hospital. "It’s probably different at universities and other locations where many of the members are on staff." To help community members feel like they are part of the committee, Price keeps them well-informed with educational mailings and relevant articles before the meeting date. "Often, the information in the packet is intriguing enough to have members attend, even those who don’t need to be there," she adds.

Get creative with recruitment

Not all nonmedical members have to be a committee member’s aunt living down the street. Look for community members who already have an interest in facets of research or education. "One place you could consider when looking for nonaffiliated members is patient advocacy groups. Many times, these organizations have members who are very familiar with the clinical trials process, and a number of them have been treated in a clinical trial," suggests Erica Heath, CIP, president of IRC in San Francisco.

Patient advocacy groups with likely local chapters include:

  • American Association of Kidney Patients — Tampa, FL;
  • American Cancer Society — Atlanta;
  • Center for Patient Advocacy — Arlington, VA;
  • Colon Cancer Alliance — New York City;
  • National Alliance for Research on Schizophrenia and Depression — Great Neck, NY;
  • Patient Advocacy Coalition — Denver;
  • Susan G. Komen Breast Cancer Foundation — Dallas;
  • Us Too! (for prostate cancer patients) — Downer’s Grove, IL.

"They make sharp, dedicated members," adds Heath. "Another place is the local school district. We’ve found that high school teachers have a fine appreciation about what is meant by an eighth-grade reading level."

Teach them their roles

Education is indeed an important aspect of nurturing the community IRB member relationship, adds Laurie Landrum, RN, MSA, CCRC, clinical trials compliance coordinator at the Medical College of Georgia in Augusta. "Educate them so they feel included and understand what they are supposed to do. I’ve found that they aren’t sure who they are supposed to protect and what they should be looking for when evaluating a study."

For smaller hospitals, like Cottage Health System, community members may comprise even more of the membership of the IRB. Therefore, the community members’ participation is even more important. "They know they are needed because they are the committee. Without them, we have no quorum and cannot hold the meeting," notes Price.

So how many community members should you have? That all depends on your situation, say those interviewed by IRB Advisor. "You need to have enough community members to matter," advises Jeremy Sugarman, MD, MPH, MA, director of the Center for the Study of Medical Ethics and Humanities at Duke University Medical Center in Durham, NC. Federal regulations leave room for interpretation by stating the IRB committee must comprise five members with one being nonmedical. "Many IRBs are much larger than that minimum, and my suspicion is that 20% community member representation might accurately reflect their interests," adds Sugarman.

Perks go a long way

And once you’ve gotten the community members, how do you keep them? "If you can’t pay them a stipend, then perks are a nice touch," suggests Landrum. "Things like gift baskets, gift certificates, or even a plaque with their name on it are all good incentives."

But even less expensive perks work well too, she adds. "You can provide meals at meetings or validate their parking." Keeping the meeting operating smoothly and ending on time also helps, adds Landrum. "Cover what is important, be on time and respectful of each other’s time; and if they sincerely feel that they know why they are there, are appreciated and shown respect, then they probably would be of great service."