Researchers discuss broader outreach for clinical trials

Ghada Bourjeily, MD, professor of medicine and director of women’s health research at Brown University Health, was happy to see Brown University Health’s annual Clinical Trials Day event take on a new life with a focus on the patient experience this year.

May 20 is considered to be the anniversary of the first clinical trial in history, a study of the effects of scurvy by James Lind, a ship’s surgeon in the British Royal Navy, in 1774.  Bourjeily, who also serves as principal investigator for Brown's IDeA State Center of Research Excellence Resource Center site, says Brown Health’s 2026 Clinical Trials Day welcomed guest speakers for the first time with an eye on patient engagement.

“We gave patients and visitors cards and asked them what their one wish would be,” Bourjeily says. “Some said they wanted world peace, others wanted cures for cancer and good vaccines. It was nice to engage with the community and learn about their thoughts around clinical trials.”

The event offered a chance for researchers to discuss ways to improve representation in clinical trials, in which the participants would better resemble the general population in factors like gender, race, ethnicity, and age. Researchers also spoke about legal protections for participants, how to engage with underrepresented populations, and, in the case of one participant patient invited to speak, their own perspective.

“Diversity in research participants is so important because our findings need to be representative of the populations we serve, not just a subset of the population that may be easier for us to reach,” Bourjeily says. “This is critical because, as scientists, we would want our findings to be applicable and generalizable, so that we can serve our patients better.”

Diversity can manifest itself in several key ways in clinical trials, she adds. For example, some diseases present differently between men and women, requiring different treatments. Having adequate representation is critical to understanding differences in sex that exist in many disorders.

“For race and ethnicity, people’s experiences can be different,” she says. “Due to different social circumstances, the way we actually implement those treatments can be different, as are the expectations from the individuals.”

Geographic location also presents unique challenges, Bourjeily says. Most major clinical centers are located in cities, and most trial participants live in or near these urban areas. Recruiting rural participants requires additional outreach, as they may face unique challenges related to distance, transportation, access to care, environmental exposures, and other aspects, and their needs from health care systems may be different.

Jennifer Welch, MD, professor of pediatrics and medical director of pediatric hematology and oncology clinical research, says ensuring legal protections for participants is also an important part of broadening representation. Her presentation drew from some of her experience as a member of the National Cancer Institutes Pediatric Central Institutional Review Board and the Brown University Institutional Review Board.

“We evaluate human subjects research for their ethical practices. Our board makes sure the risks are commensurate with the potential benefits, and ensures that such research is done in a fair and safe manner,” she says.

Such groups operate independently from researchers, and evaluate clinical studies through the lens of a societal perspective and federal regulations. For societal considerations, the challenge lies in equitable treatment of participants, ensuring that research is done with people who fully consent to participation. An example of unethical practices can be seen in the Tuskegee syphilis study, in which hundreds of Black citizens in Alabama were misled with the promise of treatment for syphilis between 1932 and 1972, but instead received nothing and were used to observe the natural progression of the disease.

“We evaluate every step of the process to make sure those who were offered to participate understand that the research is optional and they can withdraw at any time,” Welch says.

Bourjeily says that drawing on people’s desire to help their community can be a powerful recruitment tool in research.

“[Clinical trials] might not be beneficial to them at that moment, but it could be beneficial to the next person. If we don’t have participants, we can’t advance science, and we are indebted to participants for giving their time and energy, and for trusting us,” she says. “As researchers, we want to partner with the communities, learn about their priorities, and identify the best ways to shape research questions to address our communities’ health needs.”