5 Ways to Improve Minority Participation in Medical Trials
On May 12, Antidote was privileged to host an extraordinary group of patients and advocates, who came together to discuss a critical issue in medical trials and research. Led by well-known patient and co-founder of Patient Power, Andrew Schorr, the group talked about strategies for helping minority patients find, understand, and access clinical trials.
Today, medical trial participation doesn’t reflect the population of the country as a whole. White people make up 63 percent of the population, but 83 percent of clinical trial participants. African Americans make up 5 percent of clinical trial participants, but over 13 percent of the population, and Latinos, at 16 percent of the American population, are just 1 percent of clinical trial participants.
This is important because, in the era of precision medicine, we are learning that one drug does not work for all patients with that disease. Developing the best drugs for minority patients requires them to play a central and critical role in research.
Panelists discussed how everything from trial promotion to study design impacts participant diversity.
Watch the full video below, or scroll down for five strategies for improving diversity that panelists shared over the course of the conversation.
Panelists:
- Andrew Schorr, Founder of Patient Power (moderator)
- David White, Patient Advocate at the American Kidney Fund
- Michael Spigler, Vice President of Patient Services and Kidney Disease Education at the American Kidney Fund
- Diane Gross, National Director of Advocacy and Programs at the Lupus Research Alliance
- Donna Cryer, President of the Global Liver Institute
- Jason Resendez, Executive Director of LatinosAgainstAlzheimer’s Coalition
- Tom Krohn, Chief Development Officer at Antidote
1. Build partnerships with groups that patients already trust.
For some would-be participants, a lack of trust in the health care system gives pause, said Donna Cryer, President of the Global Liver Institute.
“There isn’t a foundation [of trust] laid,” said Cryer. “Efforts to bring clinical trials through to community groups, with churches, with trusted intermediaries are so important to establish that trust and rapport.”
Once patients learn about the value of trial participation through these institutions, it becomes easier to connect with researchers and medical centers, Cryer said.
2. Bring researchers and patients together in person.
Many people aren’t familiar with clinical research – in one survey, 40 percent of adults didn’t understand how clinical trials work. The Lupus Research Alliance hosted a clinical trials fair and invited both researchers and patients to help bridge that knowledge gap.
“We had more than 300 people attend the event and it reflected the demographics of the population,” said Diane Gross, National Director of Advocacy and Programs at the Lupus Research Alliance. “We brought the patients and the researchers together, talking to each other and learning from each other.”
3. Design trials to be more patient-centric.
Panelists agreed that many study designs don’t account for access issues that disproportionately impact communities of color.
“Many clinical trials, they’re always during the weekday, during normal business hours, it’s really hard for patients to get out and do that,” said Michael Spigler, Vice President of Patient Services and Kidney Disease Education at the American Kidney Fund.
It’s also important to consider whether bias comes into play when patients are chosen for a trial, said Gross. For example, a site may believe that a patient with childcare or transportation issues won’t be reliable enough. “If a patient is noncompliant, we can’t just assume that they’re not going to be good for a trial,” she said. “We need to talk with them and have them contribute to study design.”
Tom Krohn, Chief Development Officer at Antidote, pointed out that better design has benefits for the business side, too. “If you’re on the pharma side, it’s a patent-based model and time is everything,” he said. “Bad design leads to extended timelines, so if you can say here’s an alternative way to increase enrollment and shorten timelines, that’s how you get attention.”
4. Translate study language into everyday language.
Even if someone is interested in clinical trial participation, it can be difficult to first find a trial and then understand the dense language trials generally use.
“You can’t search clinicaltrials.gov if you don’t know the magic phrases that a normal person wouldn’t speak,” said Cryer.
For the Latino community, language can be a barrier for Spanish-dominant segments of the population. “A structural issue is that on clinicaltrials.gov, there’s not a way to search for trials in Spanish,” said Jason Resendez, Executive Director, LatinosAgainstAlzheimer’s Coalition.
5. Engage patient advocates who have participated in studies.
Personal stories about clinical trial participation can be some of the most powerful tools to inspire others to get involved.
“The most important thing to do is make an effort to reach the community and speak to them in language that they understand,” said David White, a patient who works with the American Kidney Fund.
“Preferably, the messaging is best received when it’s within the same culture.”
The Lupus Research Alliance is developing a peer education program to do just that.
“Patients with lupus are more likely to trust another person with lupus who’s been in a trial,” said Gross. “We’re going to train the people with lupus who have participated in a clinical trial to become educators and work in academic centers that are part of our lupus clinical investigator network across the country.”
