University of Utah IRB: A Powerful Voice for Disadvantaged Populations

The University of Utah’s Panel C is a unique IRB: Of its 10 members, only two are scientists. That gives the majority vote—and a powerful voice—to those who represent the community and disadvantaged populations.

This pioneering approach grew out of discussions about social justice during the pandemic and in the wake of George Floyd’s murder. “We started wondering what might be different if we had a panel composed mostly of community members,” says Ann Johnson, PhD, MPH, then-Director of the university’s IRB and HRPP. “The university found some pilot funding, and we decided to try it.” (Ann has since been named Associate Vice Provost of Research and Compliance at Stanford University.)

The first, and frequently most challenging, step was to recruit community members who could represent diverse populations that often are not included in research review and related activities. Ann turned to Heather Brown, MEd, who’d recently joined the IRB team to lead community engagement and health literacy efforts. Her experience and trusted relationships, built over 13 years of connecting researchers and participants, made Heather an ideal choice to serve as co-developer of Panel C and as a voting member.

Heather identified promising prospects and made the initial outreach and introductions. Together, she and Ann followed up, met with community leaders, and asked them to spread the word about the opportunity to serve on Panel C. “It was so easy to build rapport with them as residents of this county who share similar values and ideals for our community,” Ann says.

Panel C members have connections to the Black, Hispanic, Latino, Pacific Islander, and LGBTQ+ communities. Some work with refugees, prisoners, or people who are educationally, cognitively, or decisionally impaired. All bring invaluable perspectives to IRB review.

Dalton Peery is an excellent example. He is bilingual, teaches third-grade students who are on the autism spectrum, and has volunteered with the LGBTQ+ advocacy organization Equality Utah. Dalton has a niece who is Latina, whom he is raising as his daughter. Her mother, Dalton’s sister, had a substance use disorder and died while living on the streets.

“I’m passionate about working to include minority groups in the mainstream,” he says. “Any time I can help with that, I’m happy to do it.”

Scientists and IRB staff support Panel C by identifying studies that are particularly well-suited for community review. In one case, scientists were concerned about how to describe a study that involved performing a potentially risky surgical procedure on healthy participants. The scientists asked to present the study to Panel C and, as a result of its review, made changes to the consent language.

Panel C members assist other University of Utah IRBs by volunteering to serve as their community members. They also can be tapped to serve in an advisory capacity, participating in focus groups to provide input to investigators before they submit research proposals for grants or IRB review.

Recently, the University of Utah began training Panel C volunteers on health literacy principles. The goal is to involve Panel C in making consent forms easier to understand for participants and the general public.

Already, both sides are seeing benefits.

Dalton is proud of Panel C’s progress in getting more consent forms translated into Spanish, the most commonly spoken non-English language in Utah. He also appreciated the opportunity to weigh in on a study that involved young teenage girls who are on the autism spectrum.

Ann cites improvements, as well. “The process feels more bi-directional,” she says, “and we’re more confident that we have a better understanding of what the community wants.”