UB researchers find factors that encourage participation in health research

BUFFALO, N.Y. – Researchers from the University at Buffalo School of Nursing have identified several themes that can improve the design and inclusive quality of behavioral health research.

In their study, “Exploring Perceptions and Motivations for Research Participation Among Black Communities,” the researchers concluded personal benefits, community benefits, community involvement and researcher accountability were among those qualities that led to wider diversity within behavioral health studies.

And this diverse population leads to more productive and inclusive results on these studies.

“It’s important to be inclusive in health studies because people experience health care really differently depending on their backgrounds,” says Nina Ali, a doctoral student in the School of Nursing who led the study. Ali is mentored by Yu-Ping Chang, PhD, Patricia H. and Richard E. Garman Endowed Professor and associate dean for research. Chang also was co-author of the study.

“Different communities bring unique perspectives on research participation, trust and mental health,” says Chang. “Without including those voices, we not only miss key insight, but also risk developing interventions that are not well tailored to the populations we aim to serve.”

“As health care professionals, we’re supposed to serve everyone,” Ali says. “So we need research that reflects the experiences of all communities, which can then translate into practice. That helps us see how social and environmental factors affect health and lets us address gaps to make care more equitable.”

The study authors aimed to understand the motivation of why people participate in research, which provides critical insight for research recruitment and retention. It also leads to improved inclusivity in behavioral health research, specifically among Black communities, who are significantly underrepresented in this area of research.

Instead of speculating about the reasons for underrepresentation in these studies, the researchers asked the participants directly why they chose to participate in a larger mental health study led by Chang. Ali and Chang identified several themes that can improve the design of behavioral health research so that it’s truly inclusive: investing in personal well-being and growth, advocating for health in Black communities through research participation, promoting mental health awareness, community involvement, researcher accountability and diverse recruitment strategies.

Given that social determinants of health, in combination with genetic factors, account for up to 90% of health outcomes, the researchers say, inclusion of diverse populations in research is critical for uncovering health care gaps and promoting equitable health advancements.

Ali says the themes of “personal benefits, community benefits, community involvement and researcher accountability” don’t directly create inclusivity in research. But they explain what motivates people to participate in research. So understanding these factors is a way to get diverse people to take part in research, and leads to better inclusivity, she says.

“What we found is that when Black individuals perceive research as something that genuinely benefits them, both personally and for their communities, they’re much more open to engaging,” says Ali.

“There’s also a historical context, like the Tuskegee Syphilis Study, where research caused major harm,” she says. “So people are understandably cautious about research. That’s why things like researchers’ community involvement and accountability matter so much. When researchers take time to build real relationships, acknowledge past harms and show how their work is different, it helps rebuild trust. Approaches like community-based participatory research are especially important because they involve the community in shaping the research itself. These approaches make people feel respected and included, which ultimately leads to more inclusive research.”

Ali’s research interests also focus on community health for people being sex trafficked. She works with organizations that fight human trafficking, especially sex trafficking.

“This has really helped shape my research focus and gather some perspective on these women’s social determinants of health,” Ali says.

Ali’s latest research builds on her previous work in human trafficking. Her experience as an emergency department registered nurse sparked her interest for caring for assault victims. Coming from Miami, Fla., a city with a high prevalence of human trafficking, Ali became interested in improving inclusivity to support victims’ health care needs, psychological or medical.

Many individuals involved in human trafficking don’t trust health systems, according to Ali.

“They’ve often experienced stigma, misunderstanding or even blame,” says Ali. “There’s a real gap there. Even the idea of ‘research’ can feel intimidating or unsafe to them. So what this research shows – how to build trust with underserved Black communities by actually listening to their perspectives – is something we need to apply to trafficked populations, too.

“In fact, many people don’t even realize trafficking is happening in their own communities because it's so under-researched. Taking what I’ve learned from this study helps inform my broader work on supporting trafficked people in ways that are more trusting and responsive to their needs.”

Ali’s close involvement in the study is also an example of how the School of Nursing encourages its PhD students to publish research that could improve research strategies in underserved communities.

The study was published online Dec. 12, ahead of print in the Journal of Racial and Ethnic Health Disparities.