Experts Sound Off: Minority Participation in Medical Research

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Increasingly, medical researchers acknowledge the need for more diversity in study participants so that trials can better predict the real-world impact of a drug or medical device. Yet a big question remains: How can researchers better reach diverse populations to drive minority participation in medical research?

In May 2017, Andrew Schorr, Co-founder of Patient Power, led a roundtable discussion to begin to answer this question. In the discussion, the panel participants, Jason Resendez, Executive Director of LatinosAgainstAlzheimer’s Coalition; Donna Cryer, President of the Global Liver Foundation; and David White, Patient Advocate at the American Kidney Fund, weighed in on potential causes and solutions to the problem.

While progress has been made since the discussion was first recorded, several key lessons still apply:

  • To participate in medical research, minority patients need access to medical care and culturally-appropriate outreach materials for relevant trials. Sometimes, just asking people to participate is what it takes to increase engagement.
  • Researchers cannot overlook the importance of historically unethical practices involving minorities in medical research. This history must be acknowledged and addressed, if we are to move forward.
  • Successful diverse trials involve minority patients and patient advocacy groups from the first stages of trial design. Getting the logistics right can be key enrolling and retaining minority participants.
  • Whether online or in person, patient advocates who have participated in trials are valuable resources for researchers and other patients who are considering participating in a trial. They should be used for this work.

Watch the videos below for further insight into the key takeaways from the conversation and ideas on how, together, we can improve minority participation in medical research.

Read more about minority participation in medical research.

Jason Resendez, Executive Director, LatinosAgainstAlzheimer’s Coalition:

“Latinos are 1.5 times more likely to get Alzheimer’s and are less likely to be diagnosed by a physician. Less than one percent of Latinos are participating in medical research.”

 

Donna Cryer, President, Global Liver Foundation:

“As we are seeing more and more liver diseases that are being driven by obesity and diabetes and diseases where [...] it’s incontrovertible that the African American, Hispanic, and Asian populations are disproportionately affected, we have to make sure those trials don’t just meet some bare minimum. They have to start to reflect the real world populations in which they will be used.”

 

David White, Patient Advocate, American Kidney Fund:

“Tuskegee is never really mentioned by name, but it’s just embedded in our psyche.”

 

David White, Patient Advocate, American Kidney Fund:

“The most important thing to do is to make an effort to reach the community and speak to them in language that they understand, and the messaging is always best received when it’s really within the same culture.”

 

Donna Cryer, President, Global Liver Foundation:

“The more successful trials and the trials that enroll faster [...] were shown to be the ones that successfully worked with patients and patient groups very early on.”

 

Jason Resendez, Executive Director, LatinosAgainstAlzheimer’s Coalition:

“I think the focus on building partnerships between industry, between patient groups, and having the government provide channels to really focus that input and that momentum is critical. And we are seeing more and more of that.”