Partnering with the Community for Relevant & Responsive Research

Decades ago, as CEO of MOMS Orange County, a nonprofit dedicated to infant and pregnancy health, Pamela Pimentel recalls being approached by well-meaning researchers on occasion. 

“They wanted to do good work, but they were appalling in their lack of understanding of people’s daily grind of life,” Pimentel says, noting one research project in the early 2000s in which low-income pregnant women, some of whom had other children, were asked to get themselves to the Gottschalk Medical Plaza at UC Irvine. “In return, they would receive a gift certificate for lunch at Fashion Island,” she says. “It just wasn’t practical for these moms from barrios in Santa Ana, many of whom took the bus.” 

Today, Pimentel points to UC Irvine as a role model for others when it comes to conducting research that understands and positively impacts local communities. In particular, she credits the UC Irvine Institute for Clinical and Translational Science (ICTS), which views community members as key partners in moving science out of the lab and into the real world. 

Funded by the National Institutes of Health since 2010, ICTS translates biomedical discovery into clinical and community health applications, leveraging a variety of programs to support community engagement. 

“ICTS is a catalyst for innovation, collaboration and impact,” says Eric Vilain, MD, PhD, vice dean of clinical research at the UC Irvine School of Medicine and director of ICTS. “And the community is at the heart of everything we do.” 

A Seat at the Table: The Community Advisory Board 

“The way ICTS does it, it’s an academic community partnership,” says Pimentel. “It’s a change in power dynamics that puts the researcher and community on a far more even keel.” 

Retired from MOMS OC, Pimentel now serves as a Community Advisory Board (CAB) member for ICTS. 

The CAB brings together community representatives who provide ongoing guidance to ICTS and UC Irvine researchers. Meeting every other month and led by two community co-chairs, the CAB helps ensure that community perspectives are not limited to individual research projects but are represented across ICTS activities and priorities. 

“The CAB ensures community members have a seat at the table,” says Robynn Zender, who manages community engagement for ICTS. 

The CAB is also developing training and partnership resources to help community organizations and individuals build relationships with researchers in ways that support the communities they serve. 

“The CAB plays an important role in ensuring that research is conducted with communities, not simply for them,” says CAB member Vattana Peong. 

As executive director of The Cambodian Family, a nonprofit community center serving refugee and immigrant families since 1980, Peong has spent over 10 years building partnerships among community members, nonprofit organizations, healthcare providers and government agencies to advance health equity. 

“Many immigrant and refugee communities served by The Cambodian Family continue to face significant health disparities, language barriers, and limited access to culturally and linguistically appropriate services,” says Peong. “My goal on the CAB has been to foster a bidirectional partnership in which researchers learn from communities and communities benefit from research, helping ensure that scientific advances lead to meaningful and equitable improvements in people’s lives.” 

Another CAB member, Nahla Kayali, has a similar goal. Her own struggles as an immigrant are at the heart of Access California Services, a community-based organization she founded in 1998 to empower underserved populations, particularly Arab-American and Muslim-American communities. 

“We know the community,” says Kayali. “We know what works and doesn’t, because we understand the barriers.” 

Like Pimentel, Kayali recalls a time, decades ago, when researchers from another California university approached her about serving refugees.

 “I said, ‘Have you worked with refugees before?’ No. ‘Have you met any refugees?’ No. ‘So how do you think you’re going to be able to serve them?’” she remembers asking. The numerous obstacles to implementation, starting with transportation, forced the team to rewrite the proposal, even though it had already been funded. 

“It has to start with a needs assessment,” explains Kayali. “If they contact us early, we can explain the challenges so they can build them into their proposal.”

 The CAB offers a space for those early conversations, as does an ICTS Community Engagement Studio (CE Studio), a one-time meeting where researchers collect direct feedback from community members. 

Listening & Learning: Community Engagement Studios 

CE Studios bring together patients, caregivers, healthcare providers and advocates for structured discussions about a research project. 

“It’s like what we do at the CAB meeting for researchers, but with much more vigorous and intense discussion,” says Pimentel. 

Researchers come to meetings with specific questions: Is the study design appropriate? Will recruitment strategies work? Are the communication materials understandable and culturally relevant? How might this research benefit the community? What’s the best way to share the findings? 

Community experts bring something researchers cannot get from a dataset or literature review. They provide knowledge grounded in lived experience. 

“I have been able to help researchers better understand these challenges, identify opportunities to collaborate with community-based organizations, especially around outreach and recruitment of participants, and ensure that research priorities reflect the needs of diverse populations,” says Peong, “helping translate research findings into practical solutions that improve health and well-being.” 

The approach, offered at CAB meetings and through CE Studios, has informed research across a wide range of topics. It has been used for studies of conditions such as cystic fibrosis, Huntington’s disease and autism, as well as for research into medication adherence, traumatic brain injury, post-COVID conditions and prenatal environmental exposures. 

Building Partnerships: Campus-Community Collaboration Incubator 

While the CAB and CE Studio foster communication, the ICTS Campus-Community Collaboration Incubator (3Ci) program turns conversations into research partnerships. 

“The 3Ci program provides seed funding for projects that are co-designed and co-led by UC Irvine researchers and community-based organizations,” says Zender. “Rather than asking community organizations simply to participate in an academic research project, 3Ci requires an active partnership in which both partners’ expertise, contributions and anticipated benefits are recognized.” 

Both Pimentel and Kayali can speak to the benefits of research collaborations with UC Irvine. 

“We did a study on chronic disease in refugees years ago,” says Kayali, “and that led to a funding boom.” 

And while Pimentel was still with MOMS OC, she worked with UC Irvine researchers in the School of Nursing to conduct a rigorous scientific analysis that showed correlation and causation of the program on outcomes of births in high-risk moms. 

“I’m a true believer in the process of building capacity of early career researchers and nonprofits at the same time,” says Pimentel. “My nonprofit benefited greatly from the research. It gave us a leg up when we applied for funding because we had bona fide research proving our impact.” 

Expanding the Reach: The Community Health Research Exchange 

“Across the CAB, CE Studios and the 3Ci program, UC Irvine is building structures that support ongoing academic-community relationships, shared learning and greater community influence over research,” says Zender. 

They also have the Community Health Research Exchange (CHRE), where UC Irvine researchers and community members meet quarterly to explore essential topics in community-academic partnered research. 

“It’s a phenomenal program, because people come and present to other academic and community members about their project and its impact,” says Pimentel. 

The next meeting, leading into Alzheimer’s Awareness Month, is a presentation on “When Memory Fades: The Critical Role Alzheimer’s OC Plays in Connecting Communities to Research,” by Jim McAleer, president and CEO of Alzheimer’s Orange County. (You can register online for the Friday, Oct. 30, 2026, virtual event, which will be held from 10 to 11 a.m.) 

“Community expertise is an essential part of the research process — not an afterthought,” says Vilain. “Our mission is to make research more relevant, respectful and responsive to the people and communities it is intended to serve.” 

— Shani Murray