For many cancer patients, clinical trials offer a lifeline to promising new therapies. But patients in underserved and rural communities can face daunting obstacles to getting into clinical trials.
The list is long: language barriers, lack of insurance, transportation issues, limited internet access, lack of direct outreach, and even a lack of trust in those conducting the trial.
As a result, participants in cancer trials skew toward white, non-Hispanic and urban. For example, Hispanic/Latino people make up 15% of Oregon’s population, but only 5% of cancer patients in interventional clinical trials — the trials designed to benefit patients.
Eneida Nemecek, M.D., M.B.A., is working to change that. A professor of pediatrics and medical oncology in the OHSU School of Medicine and medical director of clinical research at the OHSU Knight Cancer Institute, she was recently awarded a $625,000, three-year grant from Genentech’s Health Equity & Diversity in STEM Innovation Fund to close that gap.
“I’m very excited about this project,” she says. “What I’m hoping we can do is develop ideas that will be useful nationally or even internationally.”
Helping patients, science
Growing up in a small coastal town in Puerto Rico, Nemecek witnessed health disparities in her own community. “I lost an uncle to leukemia when I was a child,” she says. “I remember my mom saying, ‘He needs a transplant but he can’t get one.’ That sat in the back of my head for a long time.”
Since then, Nemecek has worked in transplant science. She was one of the principal investigators in clinical trials for the cell therapy tisagenlecleucel, known by the tradename Kymriah, to treat acute lymphoblastic leukemia, a lethal form of cancer that affects children and young adults. OHSU Doernbecher Children’s Hospital was the first hospital in the Pacific Northwest to offer the lifesaving treatment.
But she is also passionate about providing better access to emerging new treatments. “These therapies cannot reach their potential until everyone can benefit fully,” she says.
Years of experience treating people in the Hispanic/Latino community have shown her the power of breaking down barriers. She has had several Spanish-speaking patients who would probably not have survived without a clinical trial. For these patients, it was critical to talk about the decision in their own language. As a fluent Spanish-speaker, Nemecek could explain the risks and benefits to the patients and their families, which gave them the confidence to go ahead.
“Those patients wouldn’t be alive without those trials,” Nemecek says. “I want everyone to know they can participate in everything.”
The stark disparities in enrollment don’t just hurt patients, they also undermine the trials themselves, OHSU leaders emphasize. Many trials are based on a narrow slice of the population. Their results may not apply to all patients, which feeds an unhealthy cycle where underserved communities are shut out of the system.
The path forward
Nemecek worked closely with experts at OHSU and in the community to develop the proposal: Tiffani Howard, Ph.D., assistant director of the Knight’s Community Outreach and Engagement Program; Eliana Turk, M.D., M.P.H., director of operations for clinical research at the Knight; and Verónica Vázquez, executive producer of Elemento Latino, a forum for community education and outreach across the Pacific Northwest.
Together they crafted a plan consisting of three stages. First, the researchers will conduct a series of forums around Oregon with leaders in local Hispanic/Latino communities, seeking to answer fundamental questions: What are the knowledge gaps? What are the barriers? How can we improve participation?
Based on insights from the forums, they will create an educational campaign designed to help people in these communities learn more about the benefits of clinical trials.
In the third stage, the Knight Cancer Institute will hire a dedicated nurse navigator who is fluent in Spanish and has cultural expertise in the Hispanic/Latino community. Nurse navigators help patients find their way through the complex and confusing landscape of cancer treatment. They answer questions, book appointments and connect patients to resources for transportation and lodging.
The immediate goal is to double the number of Hispanic/Latino patients who take part in cancer trials at OHSU. But Nemecek has long-term goals in mind, too.
“With this project, we aim to develop a framework to optimize the experience and access to cancer care and clinical trials for Hispanic/Latino patients in Oregon,” she says. “We hope lessons learned from this project will inform similar future projects for other underrepresented groups in our community and beyond.”