2 Key Ways To Improve Patient Recruitment Of Minorities In Clinical Trials – A Participant's Perspective

By John A. Reaves

I was compelled to participate in clinical trials for a COVID-19 vaccine after seeing a 17-year-old young man on television, crying because he had lost both of his parents to the virus. As his parents were only eight or nine years younger than myself, I found his story extremely frightening. This young man, an only child, was left to deal with the reality of not having parents to finish raising him. Around that same time, I began to receive phone calls from my African American fraternity brothers who were either fighting the virus or, in some instances, calling to tell me someone we knew succumbed to COVID.

That is when it hit me: I have to do something.

My primary care physician's office at Tryon Medical Partners in Charlotte, NC, had put out feelers looking for volunteers to participate in Moderna's Phase 3 COVE vaccine trial, being conducted in partnership with Javara. I reached out to see if I could help. They explained that they were looking for volunteers and, specifically, people of color.  I jumped at the opportunity.

I was on guard against being pigeonholed based on assumptions those in medicine may make about African American men, but I was still highly motivated to take part in the clinical trial. Thankfully, this was not my experience during the study. As an academic, I had read up on the vaccine technology, doing my own due diligence to feel more comfortable with what I was about to embark on. I fully understood there was a potential for a negative outcome, but I was willing to take that chance to help others. I was eager for the opportunity to be part of the solution.

My wife and I had previously discussed the vaccine and the possibility of taking part in clinical trials. Initially, we were a bit hesitant, thinking we would take a "wait and see" approach. This is why I elected not to tell her I had enrolled in the trial. After 27 years of marriage, I certainly do not keep much from my wife, but she is a worrier and I wanted to avoid causing her anxiety. After I had my second shot with no adverse effects, I let her know. She was not pleased; however, she understood my reason.

My clinical trial experience was very positive. I felt that the trial coordinators were responsive and engaging and there was consistent communication. I had all of my questions answered and felt supported throughout the process. In thinking about improving the participation of people of color in future clinical trials, I believe two main strategies are key.

1. Improve Communication With Participants And The Community

One strategy that I would have benefitted from and could improve participation in trials by people of color would be to pair people up with others in the trial so they could share their journey and compare notes. Although the blinded nature of studies might present some obstacles, I believe bringing participants together would have enhanced my experience. I still haven't met another African American man who participated. It would have been helpful to get that perspective.

The industry should be more proactive in communities of color to make sure that people are fully aware of their options. This goes both for creating interest in clinical trial participation and preparing these populations for what is to come—even before the vaccines were approved. If I have any disappointments overall, this is probably it. I think this was a missed opportunity, and waiting until vaccines were cleared for emergency use by the FDA was too late to start that engagement. I believe they should have been educating people early on so that by now, we would be further along in vaccine penetration.

More should have been done, and still needs to be done, to get people of color to understand why becoming vaccinated is so important and provide encouragement to get them to make that decision.  It is imperative the medical community does not talk down to people who are hesitant — I still have family members who refuse to get vaccinated despite my having been vaccinated for over nine months and writing a book about it, COVID-19 When Life Comes at You Fast. You would think that would be enough, but no. When I discussed my participation with my fraternity brothers and explained that they too could take advantage of this opportunity to become vaccinated, no one did. Once the vaccine was approved, however, they lined up to get vaccinated.

The more information shared, the better, even when it's not pretty. People prefer to know the truth, without spin or sugar coating. For example, take the seasonal flu shot compared with the COVID-19 vaccine. There are risks associated with the flu shot and other vaccines, but that is not talked about. I think those in healthcare could do a better job of noting everything we do is associated with risk, but that does not mean we do nothing. We need to take calculated risks to achieve progress.

I would love to see the organization of peer groups where folks can talk about their fears and concerns and have those addressed in a thoughtful and respectful manner. We need to have more conversations and start them earlier, even within communities who are opposed to the vaccine. By bringing information to light, having the hard conversations, and providing encouragement, we can keep making progress.

Where the medical community fails people of color is by doing a whole lot of telling and not enough listening. More proactive listening would lead to better outcomes in our communities of color.

2. Recognize The Existence Of Bias And Take Steps To Rectify It

Sadly, I think that people of color receive a certain type of treatment based on assumptions, rather than their individual situation. For me it’s all about getting great care, not what the caregiver looks like — the problem is when he or she has biases that get in the way of practicing good medicine. Therein lies the problem and that is why so many African American men and men of color in general are turned off by the system. The system often sees us as our color, not as individuals. It is no secret that many African American men do not take their health seriously. Even when they do, healthcare providers are often focused on their family history – which can typically include heart disease and cancer – instead of their individual health status and personal medical history. Having more people of color in medicine is certainly part of the solution, but that’s not enough. The problem is they are being educated within what is in essence is a discriminatory system. Being indoctrinated to treat Black patients differently is a problem.

We have to agree that we all have some sort of bias, whether racial or not. I think the medical community needs to not only admit this but recognize that it is a dire problem in our community that we must work toward rectifying. One solution could be the establishment of a coalition whereby people of color can have recourse if they believe they are not receiving appropriate medical care in any setting. A coalition could act as a sounding board and investigate such complaints in order to create change. People need recourse and they need to be heard. If someone has a negative experience in the healthcare system, particularly one that could potentially be life threatening, there needs to be a mechanism to report it. Who do I talk to if I have a negative experience at a doctor's office? Sure, I can fill out a survey but what does that accomplish?

I really believe we need to hold those in power across a variety of industries accountable by establishing entities through which people can share their negative experiences. A survey should have teeth, with follow up and action that shows steps will be taken toward a resolution. It does no good to talk about the problem but not bring forth solutions.

In education, I think we have an enormous opportunity to engage early on, whether it be during K-12 education or even in college, to encourage minorities to pursue these careers. Perhaps the industry could collaborate with physician groups to:

• Establish programs where students of color can be assessed and mentored along their paths.
• Create a communication component in medical school curriculum requirements. Medical school students could be required to spend time in disadvantaged communities as part of their curriculum to gain a better understanding of healthcare inequities. Maybe they could be encouraged to live in some of these communities and, in return, receive deferments on their student loans with support from the industry. More needs to be done earlier in medical school to make sure that we are training doctors to see people as individuals and not their race.

We need to start sooner to imbed a different way of thinking. It is about so much more than diversity. Whatever it looks like, there has to be a different approach. The healthcare sector, in general, has a huge opportunity to do some really provocative and innovative things. Outcomes would be better if we invested more up front to really help change people’s perspectives and give them experience with different communities.

All Experiences Are Local

I believe that all experiences are local. If you have experiences with different people from different races and types of backgrounds, when you are in your profession and you are presented with a situation, you will have a deeper understanding of others. That is missing from our system. Intentionally having the hard conversations, transparency when sharing information, and more listening can help connect communities of color for clinical trials.

About The Author:

John Reaves is a native of Washington, D.C., and resides in Matthews, NC. His first book, Will I Always Be A ____ In America? A Black Man's Reflections on Living in America was released in September 2020. His sophomore work, COVID-19: When Life Comes At You Fast is available in both a print and eBook edition on Amazon here.