Hilda Castillo knocked on the door of a home day care in Providence several years ago and explained she was working on a clinical trial on how different interventions could improve diet and physical activity for children in this type of child care.
The woman let her in and asked Castillo in Spanish if she was a doctor or a social worker.
“I said, ‘No, I’m simply a research assistant. All I’m doing is just trying to help you and help our researchers understand,’ ” Castillo said.
Castillo, who moved to the United States from Puerto Rico when she was 5, then began sharing stories about how she learned how to cook at a very young age to help her single mother. And these anecdotes resonated with the woman, a single mother herself, who agreed to participate in the study.
“Recruiting for research studies is all about the connection and the trust that you bring when you’re in front of that person,” said Castillo, an engagement and outreach specialist for Advance Rhode Island Clinical and Translational Research – or Advance RI-CTR – an initiative that supports researchers in the state with funding and resources.
Advance RI-CTR – a partnership among Brown University, the University of Rhode Island, Care New England Health System, Lifespan Corp., the VA Providence Healthcare System and the Rhode Island Quality Institute – is putting focus on boosting recruitment of Latinos and other minorities for health studies and trials because researchers believe a lack of diversity in clinical trials contributes to existing inequalities in health care for minority communities.
Indeed, Latinos have long been underrepresented in these types of clinical research.
A 2022 study by the American Society of Clinical Oncology found Latinos make up around 19% of the nation’s population but participate in less than 7% of clinical trials. Another study by the National Academies of Sciences, Engineering and Medicine found that the average percentage of Hispanic participants in clinical trials among the top 10 institutes or centers within the National Institutes of Health decreased from 11.3% in 2016 to 6.7% in 2017.
There are several factors keeping Latinos and other minority communities from participating in clinical trials, but one of the main reasons is mistrust and perceived racial discrimination, according to Alison Tovar, a researcher and co-lead of the community engagement and outreach core of Advance RI-CTR.
Tovar says the mistrust largely stems from historical mistreatment and exploitation of minority communities by health researchers.
Meanwhile, minority populations face greater challenges with what are known as social determinants of health – nonmedical factors that affect health outcomes such as housing, income, education and access to food. This means they are more likely to be unemployed, live in poverty and be food insecure, which impedes their ability to participate in trials.
To boost participation in clinical trials, Tovar says, it’s crucial for researchers to invest time in the communities to listen and educate people about their work and why they’re conducting studies.
“Our mission is really to build that trust with the community,” Tovar said. “How do we do it? It’s by listening; it’s by showing up.”
Castillo says she does this by meeting people where they already are to just talk, build relationships and educate them about research.
But she’s not alone. Dr. Vivian Sung, a researcher with Care New England, has a grant from the Patient-Centered Outcomes Research Institute that includes support for recruiting and engaging with members of minority communities for her study.
Denisses Cortorreal, a community liaison at Care New England, plays a critical role. Like Castillo, she spends her days educating people about clinical trials. But even if Cortorreal doesn’t recruit anyone for trials, Sung notes that the time is still well spent because the focus is on building relationships.
Along with mistrust, language and cultural differences often prevent Latinos and other minority groups from participating in clinical trials, says Dr. Martha Sanchez, a researcher and adult infectious diseases physician for several Lifespan hospitals. Some researchers don’t make the effort to translate recruitment materials into a way that is understandable, she says.
Diversity in clinical trial recruitment teams counteracts those issues. Sanchez says the R.I. Department of Health deploys community health workers who can speak different languages and have cultural knowledge such as Castillo and Cortorreal. Similarly, Tovar says RI Advance-CTR has a community action advisory board and works with different groups to connect with and listen to members of minority groups.
Sharon Rounds, program director and principal investigator for RI Advance-CTR, says she is appreciative of those who can and do participate in clinical trials because they help improve health outcomes for everyone.
“I’m just always so blown away by the willingness of people to inconvenience themselves for the good of the group,” Rounds said. “That’s a wonderful thing.”
