Sponsored By: RESEARCH INCLUDES ME
Presented By: Matthew L. Boyd, Pharm.D. Senior Oncology Medical Science Liaison
Johnson & Johnson Innovative Medicine
Matthew L. Boyd, Pharm.D., shared information on efforts to diversify clinical trials at the Black Health Matters Spring Summit. He spoke from personal experience. “I work with a lot of those community and academic institutions to bring our innovative trials to those institutions to support and take care of patients, hopefully,” he said.
He revealed that of the 24 out of 31 trials approved between 2015 and 2017, “less than five percent of them had Black or African-American enrollment.”
“So, think about that, all the cancers that we particularly treat from non-small cell, lung cancer to prostate cancer, to multiple myeloma, which disproportionately affects African Americans and Black patients, less than five percent of those,” he continued. “We cannot just be okay with that number being where it’s at.”
He acknowledged that the medical establishment has not always respected minority communities. This has led to significant mistrust among certain demographics.
“That leads to African Americans and minorities being less likely to go to their doctor,” he said. “There’s a lot of mistrust opportunities there.”
He described other hurdles to engaging diverse participants as well. “We also have some communication barriers. We know that many of our health systems are based in what can be described as almost redlined areas,” he continued.
Dr. Boyd explained the steps that need to be taken to engage those people. “You’ve got to travel there,” he said before pointing out other factors contributing to the staggering statistics. He emphasized the importance of “being able to talk to patients directly where they are in their neighborhoods and having opportunities to engage with patient populations and community leaders.”
Mistrust and redlining are not the only issues affecting diversity rates.
“There’s a lack of diversity within our healthcare institution as well,” he said. “So the position that you’re seeing, the nurse that’s going to be treating you, the phlebotomist that’s going to be drawing your blood, do they look like you?
Is that someone you can talk to, someone you can trust to tell you what’s currently happening?”
Misunderstandings about financial commitments can deter patient participation. They can avoid seeking care and information because they assume they will be charged.
“One of the things that sometimes people are not told or are not counseled on is that many of the clinical trials I work in are fully funded. Meaning you are going to get that medication for free. You don’t have to pay for it,” he said.
Assistance with enrollment allows potential participants to make an informed decision.
“You’re enrolled in it. We’re collecting data on it. But you get that treatment for free.
One of the things that we’re also doing is ensuring that those items are passed down on to patients so that you’re informed that you’re getting that treatment for free so that people can talk you through enrollment,” he said.
The Research Includes Me initiative has a website that clearly defines the parts of a clinical trial.
Dr. Boyd and his colleagues consider “the convenience factor” as well, knowing that practical concerns can prevent a patient from seeking care. “It’s very hard for a mom or dad who has just received this particular diagnosis to say, I’m going to be enrolled in this clinical trial, and I’m going to go take all these labs, and I’m going to go and deal with the parking situation,” he said.
“The logistical burden that patients have to go through. That’s been a big factor that’s led to enrolled patients, who then decide I will no longer be enrolled because there are too many appointments.”
The next phase in intentional inclusion in clinical research is building partnerships with institutions prepared to serve different types of people. Providing them with the proper resources to extend their offerings is imperative.
“It means going to different institutions, helping them build out the infrastructure to actually be able to do research at that particular institution, providing grant funding to hire and train people,” he said. Learn more about Research Includes Me here.
