By Clinical Informatics News Staff

August 11, 2015 | Minorities are under-represented in clinical trials even as they carry greater disease burden, particularly for cardiovascular diseases.

Dr. Priscilla Pemu, director of clinical trials at Morehouse School of Medicine, spoke with NPR about the challenges and opportunities increasing the number of minorities in clinical trials, and how much impact the Tuskegee experiment that from 1932-1972 still has on African American participation in clinical trials.

Tuskegee’s impact can’t be discounted, but Pemu believes it’s not the only force shaping minority representation in trials.

“There definitely is that discomfort on the part of the community about whether they will be treated as guinea pigs or not,” she said. “But the reason for low participation in trials is a little more nuanced now,” she said.

Pemu pointed out that people are most often introduced to clinical trials at the point of care. Minorities in particular are more likely to hear about and agree to participate in trials that are suggested by their own physicians. However, she finds that minority physicians seem to be less connected to the clinical trial network than white doctors. Perhaps minority physicians have fewer industry contacts, and community physicians are less-closely tied to major research institutions, Pemu posits. But community physicians are certainly at a disadvantage when it comes to previous trial experience.

“The way clinical trials are done, they have to be run efficiently because they tend to be extremely expensive,” Pemu said. “[Sponsors] consider any minor delays as unconscionable. They will go back time and again to what they consider “tried and trusted” [investigators who] will deliver quickly.”

To address that experience gap, Morehouse and other groups are working closely with minority physicians—many in smaller, community practices—to equip them to run trials and connect their patients to trial opportunities.

Morehouse’s Community Physicians Network is partnering with doctors to address CRO concerns about the speed of contracting or IRB approval, getting informed consent, and providing trained study coordinators at the practices.

“We’ve actually worked with our physicians to get them trained and get them ready, and we’ve presented ourselves to contacts we’ve made as being prepared to get minority investigators taking part in studies,” Pemu said.

Having active clinical investigators is crucial, Pemu says.

“If we don’t participate as minorities in research, we’re putting ourselves in a position where studies happen, but you don’t necessarily have your data in that, so you don’t know if it necessarily works for you.”

Listen to Dr. Pemu’s full interview here.