University Times

As the proverb goes, it takes a village to raise a child. The same might hold true for researchers who hope to conduct research in the community.

In addition to being expert in their fields of study, researchers must navigate governmental, institutional and funding agency requirements. While plummeting paylines and Institutional Review Board (IRB) scrutiny can complicate a research project, another danger lies simply in not understanding the community, said Jeannette South-Paul, chair of Pitt’s Department of Family Medicine and medical director of UPMC’s Community Health Services Division.

“Experienced researchers realize that their first job is research. They must ensure their projects meet IRB guidelines and fit into the funding specifications. It’s hard to have your fingers on the pulse of the community,” too, said South-Paul, who co-chairs Pitt’s Community Research Advisory Board (CRAB).

An initiative of the Graduate School of Public Health’s Center for Health Equity (CHE), which studies ways to reduce health disparities in underserved populations, the all-volunteer CRAB provides feedback to investigators at any stage in their research. The group of more than 30 people includes members of the University community and its neighbors, among them clergy, representatives of community groups, social service agencies, businesses and foundations. Its role is advisory and participation is strictly voluntary.

“It’s a broad array of folks with an interest in health,” said CRAB co-chair Mario Browne, director for health sciences diversity in Pitt’s Office of Health Sciences Diversity, who, like South-Paul, has been part of CRAB from its inception.

Formed in 2001 under CHE’s predecessor, the Center for Minority Health (CMH), CRAB’s initial aim was to reduce health disparities by fostering cooperation between researchers and minority communities and connecting researchers and under-represented populations.

Browne, a former CMH staffer, said a central reason for forming the board was that researchers would seek CMH director Stephen Thomas’s help with increasing African-American participation in their research studies, “often at the 11th hour.” Providing a resource to help with recruitment strategies and similar needs, “encouraged them to think proactively, rather than when they were in crisis mode,” Browne said.

South-Paul stresses that CRAB is not a governing body. Government protections are handled by the IRB. To help members understand CRAB’s role, representatives from the IRB periodically meet with them to discuss the rules and protections that already are in place, South Paul said.

“This group creates an opportunity for the community to provide input into research,” South-Paul said. “It’s not the IRB, not designed to fill government requirements. The goal is to get as balanced input as I can.”

CHE scientific director and public health faculty member Patricia Documet said researchers sometimes don’t have connections in the community. They can use advice from CRAB members on how to be more relevant, more respectful of the community, or on how to create more appealing recruitment ads or more understandable study materials. CRAB’s input also can help them avoid being inadvertently offensive. “People don’t know sometimes,” she said.

Researchers needn’t have a minority component to the project they’d like to present to the board. For instance, one nursing researcher’s project centered on studying the use of smart phone technology in weight-loss programs.

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Initially aimed at making connections in the African-American community, the region’s largest minority group, CRAB continues to increase its own diversity. The goal is “more varied communities and more perspectives,” Documet said. Latinos, people with disabilities and gay and lesbian people are among the voices at the table. CRAB recently added students to the board, accepting two master’s and two doctoral students and one post-doc as members last fall.

And, Documet said, rural populations represent another sort of diversity. She admits that because Pitt is not in a rural area, it is difficult to include that population, but notes they would be a welcome addition to the group.

She said CRAB also seeks perspectives from varied professions, such as law enforcement, attorneys or health organization executives.

University members represent both research and non-research disciplines, with the aim to remain weighted a bit more on the “non” side, to broaden the perspectives, Documet said.

Browne noted that the board includes about a half-dozen founding members, with others who have joined more recently. “The ongoing strength of the group reflects the respect that the community at large has had for CMH and their work in bringing resources of the University to underserved communities,” he said.

In selecting members, Browne said, it’s a matter of finding who should be at the table rather than a “one of these, two of those,” sort of approach. The quest is to offer “a mixture of perspectives that from a public health approach can inform policy,” going beyond racial and ethnic diversity, Browne said. “It’s a broad array of folks with interests in health, in research in terms of health equity, plus people with good science backgrounds,” he said.

Its organizing premise was that research not only must be practical and benefit the broader community, but it also must be good science.

Documet pointed out that CRAB differs from most community advisory boards because it includes both researchers and community members.

Relationships can be strained if the community feels as though researchers are outsiders who want to “do” something to them. In contrast, here community members and researchers work together.

CRAB’s existence serves to strengthen the recognition that the community has something to offer, South-Paul said. “We sometimes forget the assets that the community brings,” she said. “The community is not a deficit model; the community is an asset model. It brings things that should be prized.”

The partnership is a two-way street, however. “If the goal is to have input and shape research being done in the community, the input needs to be done respectfully,” South-Paul said.

Early on, she recalled, the board was especially harsh with an investigator. She raised the issue at the following meeting, pointing out that researchers aren’t required to seek CRAB’s advice. “Rather, they offer the courtesy of allowing the opportunity to voice your opinion. If you lambaste them, they won’t come,” she told board members.

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CRAB members aren’t paid, but they are provided parking and lunch at the monthly midday meetings.

South-Paul said the initial plan was for CRAB to meet in the community, but that quickly changed because members wanted to come to the campus. “They found it prestigious to be serving on a board that was a University-sponsored entity.”

Researchers submit in advance copies of the material that study participants will receive, along with a brief summary of their project and a description of what sort of feedback or help they are seeking from CRAB. At the meeting, they introduce their project, then answer questions and get feedback from group members. Devil’s advocate questions and “what-if” suggestions abound. The overarching atmosphere is one of mutual regard, with comments and questions offered from all around the table and no one member dominating the conversation.

Respect is a core value of CRAB. “No matter what walk of life, what they do for a living, respect for each other is built into the group’s principles,” Browne said. “No question is a dumb question,” and members are offering authentic input.

Browne said he encourages researchers to keep in mind that the group is representative of the community. When a member makes a basic, yet profound comment — if someone is confused by the study materials, for instance — the researcher would do well to consider whether targeted participants also might have difficulty, Browne said. “There are often some ‘aha’ moments.”

Board members do speak their minds and provide researchers with a reality check. If they think a proposal is going to be a hard sell, they’ll say so, South-Paul said.

“Sometimes researchers don’t realize what they’re asking for.”

She offers one classic example: Researchers who expect research subjects to fill out forms and jump through hoops “merely for the joy of knowing they are contributing to knowledge,” South-Paul said. “What are you thinking?” is members’ likely response.

“They can let academics know when they’ve been in the ivory tower a bit too long,” South-Paul said.

CRAB members also can be direct in asking researchers to look in the mirror — sometimes literally — in terms of gaining entry into a community. Sometimes the message is as simple as recommending that they consider hiring study staff from the community itself. “Look at what you look like and the community where you need to work. You need to re-think who you’re hiring” might be the suggestion. “You have money, you’re here three-five years. Demonstrate to the community that you value them,” she said.

“Perhaps (a hiree) has education or research experience, but it will be hard to gain entry into the community if they don’t also speak the language of the community,” South-Paul noted.

Whatever the input, researchers receive a summary of the board’s suggestions after the meeting. They’re also encouraged to return for additional help, or to report on the outcome of their project.

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Documet said she is pleased to see more researchers coming to CRAB at the proposal stage — where the board’s input can be incorporated into research projects at the start rather than fixing problems later.

Previously, more researchers would come to CRAB because they were having difficulty collecting data in certain communities. “It’s increasingly frequent to see proposals rather than underway research in the committee,” she said, adding that funding sources often view such consultation favorably in considering research proposals. As a researcher, consulting with the community “shows you’re sensitive and serious,” she said.

And, CRAB isn’t solely for younger researchers, Documet noted. Many experienced investigators bring proposals to the board regularly. “They enjoy it and tell us it has been helpful.”

Researchers from any discipline are welcome to come before the board, Documet said. And, while CRAB exists mainly to serve Pitt researchers, investigators from other institutions are welcome, when time permits. “It’s good to build bridges.”

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For more information on the CRAB, visit www.healthequity.pitt.edu/community-research-advisory-board.

—Kimberly K. Barlow