How Can We Improve Minority Representation in Clinical Trials and Laboratory Validations?
More Programs and Publications Featuring Dr. Marilyn Bibbs Freeman
In this program:
How can clinical trial participation and laboratory validations be increased for BIPOC and minority patients? Dr. Marilyn Bibbs Freeman from Virginia Department of General Services Division of Consolidated Laboratory Services (DCLS) discusses ways and places to build medical trust with underrepresented patients.
Transcript
Interviewer:
So clinical trials are tomorrow's medicine today, but lack of participation is very high, and this can be for a plethora of reasons, probably the highest being the guinea pig complex that patients may have. So what are some of the ways to improve underrepresentation of minorities, especially in clinical trials and laboratory validations?
Dr. Marilyn Bibbs Freeman:
Absolutely great question, and this is something I actually have some personal experience with, which I will share with you towards the end of my response, but I would like to first just say we really need to first take a look at the barriers. I'm a scientist through and through, so what's the root cause of the situation? Why do people of color or other under-represented minorities not get involved in these clinical trials, and when we answer that question, we have to really look at a historical perspective and lived experiences. From a research standpoint, and there's tons of research about trust in the community, trust is a problem as it relates to medical professionals. Really remains as one of the top reasons why minorities choose to forego participation in clinical trials. So we really have to be intentional about building trust. The COVID-19 pandemic wasn't great for that, because at the rate we had to create trust around the vaccine that had not been very tested…
Interviewer:
…was very fast…
Dr. Marilyn Bibbs Freeman:
…very fast. We didn't use the marketing campaigns that we typically use when we're going to roll out different types of medical care. There were some steps that were skipped that helped to build the trust, and so that compounded the issues with trust that were not already present in these communities. We really have to begin partnering with community champions, being present in spaces where the underrepresented live and work and play.
But another thing that became really prominent during the pandemic is this concept of misinformation and disinformation, and malinformation. These communities are already distrustful of us. And it became really easy for a person that already has a poor understanding of the science to forego participation in any type of clinical trial or verification and validation study with poor information compounded on top of trust issues. The problem was exacerbated by bad players, purposefully spreading bad information and sometimes...
It enters like wild fire from person to person to person. From a personal perspective, I will share that I decided personally to become involved in a clinical trial for COVID-19. And there were really two reasons, one was selfish, and that first reason was about a...
Yes, I wouldn't be honest if I wasn't telling the truth, but I work in the healthcare field, it is very important for my laboratory to continue running at the time, we were the only laboratory providing COVID-19 testing in our state. So it was really important to me to not only protect myself so I can be available to my staff, but also protect my family, and so if this was opportunity to do that, I was going to take it.
At the same time, I had a college person that I went to college with, a friend, and he said, “I'm not doing this trial, they're asking me to do this trial, I'm not doing it.” His words, exact words were, “I'm just not feeling it. I don't trust it, I'm not comfortable.” And so this conversation he was actually having on social media, so I chimed in, I was like, “I think it's important for me to say as an African American, I have participated in this trial, I am feeling fine, I am feeling well, I understand the science behind it. And I am willing to stand behind that and help to educate and teach the communities.” Out of that conversation with him, who was also an African American male was born a Facebook lab session that we promoted, and we opened it up to explain the science in layman's terms to people who are having the same problems as him and answer their questions, no matter how silly they may think they are, we answered them with sincerity and compassion so that others would be willing to not only participate in the clinical trials that would support the eventual distribution and out-rolling of these treatments, but also would feel comfortable enough to even get it once it was approved for use. And so I'm really proud of that work, but I want to kind of just wrap back around to trust, putting ourselves on the front line speaking to everyone, not just the people that can afford it.
Not just the majority class, we have to intentionally be in spaces where the underrepresented, are operating, functioning, living, working, playing.
Interviewer:
Yes, and...well, I can speak from experience perspective, because I work in clinical research with cancer patients, and I've done this for three years, and I can count literally on probably on one hand how many times of all of the patients that I've been around, they've been patients of color, and I can remember one particular patient that I had met, it was an African American woman, and she was there with her daughter and she was there with her sister to discuss a clinical trial that I was presenting to her, and I could just see it in her eyes that she was immediately probably just going to tell me no, I don't want to, I guess I'll be here to just listen to it, but I don't think I want to do this. And the first thing I said to her was, Okay, we have rules. This isn't Tuskegee. And I think the second I said the word “Tuskegee,” she was just like... she wasn't expecting me to acknowledge the elephant in the room that, yes, a lot of people that look like us aren't necessarily walking around these halls for multiple reasons, insurance and things like that, but I want you to understand that your safety comes first, whether it's standard care or clinical trial, and between...as safety goes, there's really no difference between the two.
And I think as soon as patients can understand that, they know that, Okay, basically I'm going to be treated the same way on a trial as I would be with standard care, the same safety precautions, perhaps even more so because it's a clinical trial, then now I feel safe now, I can really consider this opportunity and actually think of it as an opportunity, not just something that I'm immediately going to say no to, so yes, it's definitely important to... Being, especially a person of color speaking to another person, yes, you can, I understand what you're thinking. You don't even have to tell me, we can address it right now. And building that trust.
Interesting point, acknowledging the atrocity. Acknowledging the historical context around which...
Dr. Marilyn Bibbs Freeman:
Was built. It's a requirement, you can't overlook it and think people are just going to trust you because now we're doing things...
Interviewer:
Exactly.
Dr. Marilyn Bibbs Freeman:
Better. They want to see us doing things better, I can honestly say I was monitored more by physicians during that trial than I am ever. I mean, blood work, phone call check-ins asking me to put symptoms in. Blood work, urine and I was just like, wow, I was like, I don't get this kind of care from my general practitioner.
Interviewer:
It's a lot.
Dr. Marilyn Bibbs Freeman:
It is a lot. I felt safer. And then the other thing that we can remember that there are databases that you can report to notify about adverse events happening to you, and they're taken very seriously.
Interviewer:
They are required.
Dr. Marilyn Bibbs Freeman:
They are required, and what came to me was that someone was like, Well, we're just putting our stuff in there if something happens to us and no one's looking at it, and I was like, no. Yes, it is being monitored, it is being monitored. Data is being calculated, follow-up is being done. And they were like, we don't see that happening, and that's true. So I think sometimes we have to be just as transparent about our wins as we are about the failures. Trying to start building that trust again with the community.
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