Breaking Down Barriers to Clinical Trial Participation

April is Minority Cancer Awareness Month and Minority Health Month

When it comes to medical treatments, we’re not all alike.

Women and men sometimes need different dosages of the same drug. One drug for heart failure works very well in black patients but not in white patients. And although African-Americans and Puerto Ricans have the highest rates of asthma in the U.S., they are far less likely than people of other ethnic and racial groups to benefit from albuterol, the most commonly used asthma medication.

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Because different bodies respond to treatments in different ways, it’s important that patients of different genders, ethnic and racial backgrounds participate in clinical research studies — also called clinical trials — which pave the way for FDA approval of new treatments. Clinical trials help researchers determine whether new drugs and other treatments are safe and effective. Studying the treatments in diverse patients helps ensure that the treatments will work well in different types of people who may need them in the future. This is one way we may be able to change the unequal impact that some diseases, including cancer, have on minority groups.

Unfortunately, minorities are far less likely than white patients to enroll in clinical trials. In the U.S., 83% of all clinical trial participants are non-Hispanic whites, even though they make up less than 62% of the population. One article notes that “only 2% of cancer studies…have studied enough minorities to provide useful information.”

But there’s good news: research conducted at Roswell Park shows that “when given the opportunity, minority patients are just as likely as anybody else to enroll in a clinical trial,” says Deborah Erwin, PhD, Director of the Office of Cancer Health Disparities Research. Several things have to be in place to make that possible:

  • Patients need to understand what a clinical trial is and be informed about any trials for which they’re eligible. That information should come from the physician or a research nurse.
  • Clinical trials should be “affordable and accessible, so the process works for everybody,” says Erwin. Patients should be informed up front about any extra costs involved with the study and whether their insurance will cover those costs.
  • Eligible patients should be encouraged to ask questions about a clinical trial. “Whether they decide to enroll in a clinical trial or not, patients need to be comfortable with the decision they make,” says Laurie Musial, RN, MS, CCRP, Assistant Vice President, Clinical Research Services and Administration. “We want them to know what their options are, have all the information about the clinical trial, and then make the decision with their loved ones.”
  • When possible, navigators — staff who specialize in guiding and supporting patients throughout their treatment — should be available to assist patients who enroll in a clinical trial.

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“We do a better-than-average job of recruiting all patients to clinical trials,” says Erwin. “Only about 8% of cancer patients in Western New York are African-American, and in 2016, about 9% of our clinical treatment trial participants were African-American. We’re increasing Hispanic patient enrollment overall; generally, it’s between 2-3%, which is pretty good. And we have an increase in Asian patient enrollment — that’s almost 2%. If we include all of our treatment and population science intervention studies, 27% of all participants were from a minority subgroup.”

She says outreach programs have further boosted minority participation in clinical trials offered at Roswell Park. “We have community partners that work with us to help recruit, inform, educate and enroll patients, and they’re great research partners for us.

“We need to make sure diverse patients and groups are at the table to learn about things, so they’ll have a choice.”

Learn about Averl Anderson’s experience as a participant in a clinical trial for breast cancer patients.