When Claribel Crews, MEd, a Providence school counselor, was first asked to join a panel of community members to advise a Women & Infants Hospital researcher’s project about cesarean sections, “I was like, mmmm, no,” she recalls.
Crews has three children, ages 9, 6, and 2, all delivered by C-section—something she didn’t share widely. “There’s such a taboo about having a C-section in certain places that I wasn’t really sure that I wanted to, for lack of words, out myself,” she says. But then she found out what the researcher was studying, and Crews’ curiosity won out: “An app for a C-section? What do you mean?” She signed up for the group.
The app was designed by Alexis Gimovsky, MD, a maternal-fetal medicine specialist at Women & Infants, who says she intends it “to decrease the number of cesareans.” It uses data from 200,000 women during childbirth to “guide clinicians during the pushing phase of labor by offering real-time predictions about the likelihood of a safe vaginal delivery, versus the risk of an operative or cesarean birth,” she says.
Gimovsky had applied for grants to develop the app and study its effectiveness; grant reviewers suggested she involve patients as well as providers in her research. To do that well, Gimovsky says, she needed help from “regular people,” not just academics or doctors. And she knew who could help her find them.
Advance Rhode Island Clinical and Translational Research is a federally funded hub of resources for scientists throughout the state. Among its many services, Advance RI-CTR helps organize focus group-type gatherings called Community Engagement Studios, where researchers present their projects and get actionable feedback from the people their work is intended to serve.
After Gimovsky, an associate professor of obstetrics and gynecology at Brown, was accepted for a studio, the Advance RI-CTR team gathered six local participants last summer. They got to know each other over a meal before Gimovsky’s presentation; then the women, who'd all had C-sections, shared their thoughts. The discussion was so “lively,” Gimovsky says, that she couldn’t get to everything on her agenda. And, she adds, it was very different from the feedback patients give her during office visits.
“There were less barriers to community members presenting their real experiences,” Gimovsky says. “I think [the women] let their guards down to show what their true experiences were.”
That was definitely true for Crews. “It felt like a therapy session that you didn’t even know you needed,” she says, and created a safe space to share honest critiques of the app. “Some of the stuff just seemed very nerdy,” Crews says. A person in labor “doesn’t want to look at this graph that they can’t read. Make it very simple. Like, here, this is where I’m at. Like a map at the mall: you’re here, and you need to get here.”
That suggestion, among others, got Gimovsky thinking about “changing the output of the app to have a patient-facing screen and a provider-facing screen, to show the information in two different ways.” Thanks to the studio, she says, “the grant is being reshaped for resubmission.”
Advance RI-CTR began offering studios two years ago within its Community Outreach and Engagement Core, part of a larger effort to involve Rhode Islanders at every stage of research. Other initiatives of the CEO Core, which is led by faculty at Brown, include a board composed of community liaisons who advise Advance RI-CTR on research priorities; and a network that connects clinicians with resources to do research themselves.
Finally, the CEO Core offers training sessions, guides, and other tools to help researchers work with people in a respectful, reciprocal way—a crucial need identified by study participants whose negative past experiences seeded an ongoing distrust, according to core staff.
“All it takes is one researcher doing things inappropriately to ruin the reputation,” says project manager Tammy Thorson, MS. Participants in local harm reduction and substance use studies have reported feeling mistreated, and have called for more collaboration between scientists and community members to shape future research.
Study participants also want to be kept “in the loop,” Thorson adds. Her colleague Hilda Castillo, who has years of experience recruiting people from diverse populations for clinical trials, says participants later told her, “You complete a study and you never bring that paper to the community. How do we find out what the outcome of this study was?”
Another challenge is a lack of coordination among researchers, who may contact the same people again and again for their various projects, says Alison Tovar, PhD, a co-lead of the CEO Core. “That is always one of the complaints [from community members]: they think we talk to each other, and obviously we don’t,” Tovar, an associate professor of behavioral and social sciences in Brown’s School of Public Health, says.
To avoid duplicated efforts, the CEO Core contributes to an online platform that keeps track of community connections. Brown’s Swearer Center for Public Service—whose mission centers strong relationships with local people and organizations—created the platform. “Community issues and priorities don’t exist in disciplinary silos,” says Julie Plaut, PhD, the director for engaged scholarship at the Swearer Center. “We’re trying to increase knowledge and connections across silos in order to be less burdensome on partners.”
Plaut leads an annual professional development retreat at Brown for community-engaged researchers and instructors. “Learning to work effectively in collaboration with others is an ongoing process, and we want people to be aware of all the supportive resources available,” she says.
Tovar and others say that Brown can seem inaccessible and disconnected from the rest of the state—“very Ivy,” as Tovar puts it. The new focus on community engagement aims to repair that reputation. The studios and community advisory board, for example, send the message that “you are the expert of your lived experience, and we want to hear that,” she says. “We have our literature and our papers that we read, and that’s important,” Tovar adds. “By really giving [the community] a voice, it’s going to just make a better research study overall.”
Crews says more researchers should consider doing Community Engagement Studios. She likens it to her own work at Charette High School in Providence, where when students want something changed, she’ll bring them together to get more information, and ask for their solutions. “It just makes a bigger impact,” she says. “Getting the feedback from the community you’re trying to serve is essential.”