’ve been to many conferences and heard a lot of talk about how to engage underrepresented populations, especially in Black/African-American communities, to enroll in clinical trials. Far too often, too many conferences place these discussions about enrolling missing populations at the end of their meeting or conference. By that time, the people who would benefit most from these solutions, or need to hear them the most, are often more concerned about getting home to their loved ones or may have already left the conference altogether. (My opportunity to speak was scheduled and presented on the first day of DIA GAM 2023; it was directly after the opening plenary session, while all attendees were still present and energized.)

Another issue that can arise when healthcare professionals, researchers, and other stakeholders continue to ask for patient advocates to share their perspective with the goal of resolving these problems is that this message is often received by the audience as them being scolded or blamed for these problems.

This must change. Conference planning committees must utilize patient voices, but with a different tone and perspective that will be more engaging and resonate with the intended audience. This dialogue will create shared responsibilities between the patients and their audience: Patients will receive information that helps the field of patient advocacy, and the audience will better understand their responsibility to design and implement the changes we need to put in place in order to make these missing populations more willing to enroll in their clinical trials.

Three Pillars for Building a Representative Research Framework

• Fundamentally and most importantly, all implicit biases (intentional or unintentional) must be acknowledged by everyone and then reduced and eventually eliminated. When all involved parties recognize these biases and then move past them, the real work can begin.
• Allow patients who have lived or continue to live with their personal history of their disease(s) to represent their marginalized communities from the beginning. Allowing these patients to begin educating their own communities creates a foundational trusting relationship.
• After establishing this trust, research professionals and other stakeholders can enter this dialogue to continue advancing the (hopefully) bidirectional learning process that helps that community learn more about clinical research options and helps researchers learn more about that community.

Building trusted relationships within marginalized communities must be continuous and not only when it is convenient for research sponsors. Too often, researchers and sponsors contact marginalized populations for their studies late and only to meet specific recruitment, enrollment, or completion guidelines. This practice of using marginalized communities as “check marks” on a requirements list is mere tokenism and must cease!

Meeting People Where They Are

Inviting marginalized communities to participate in clinical research remains the obligation of study sponsors and research professionals, not of these communities. The most effective invitations will meet patients where they are, recognize and respect their challenges and hopes, and create two-way dialogue that increases understanding between researchers and research patients.

For example: Look at those communities where there is a high population of Black and Brown people in Philadelphia, PA (US). People don’t want to go into those communities. Most clinicians, researchers, and other healthcare professionals who are unfamiliar with these areas only know about these communities from news or other reports, which can be so unflattering that they often frighten these professionals to the point of avoiding these communities entirely.

Churches are a great place to start. But when people do outreach to a church, it’s almost always to a “megachurch.” Yet going to megachurches can be like preaching to the choir; most of these people have access to healthcare and health insurance, for example, which means they’re not as marginalized as other untreated or uninsured people in the same general geographic location.

When I say meet people where they are, I’m specifically talking about the “mom and pop” churches in neighborhoods where most professionals do not want to go. I’m also talking about “mom and pop” hair salons and barbershops. These small churches and shops are often in neighborhoods where nine out of 10 people don’t want to go because it’s a high-crime area. The same can be said for many free clinics and/or community hospitals in these areas, but that’s where many of these marginalized people go to find care.

I was diagnosed with breast cancer in December 2013 and noticed the disconnect when I started receiving my treatments and going to different free events that cancer centers were holding in 2014. I was always the only Black person, or maybe there might have been one other Black person, there. And when researchers or clinicians came into our community to talk to us, unfortunately it was always somebody white with blond hair and blue eyes: The Great White Hope coming to save us Black and Brown folks.

After you see this disconnect, you speak up. You speak up for yourself and for those who may want to speak up but don’t know how. I have always been an advocate for my health. I speak up for the voiceless. I give voice to the voiceless.

We’ve got to listen to people. We’ve got to have empathy. We can start training the next generation of people coming into the medical field. Start with them. Go to the Ivy League schools, but don’t forget the Historically Black Colleges and Universities, the HBCUs.

But we need to think about more than the college level. We need to go back to middle school and high school and get them to want to go into the medical or STEM (science, technology, engineering, and mathematics) fields. Focus on making sure that this next generation of students can get into medical school. If we want to make the medical and research fields diverse, we need to go where the diversity is. If we don’t start training people, and not just Black and Brown people, then we’re going to continue this crazy, vicious cycle.

When you go in those communities, don’t leave. I’ve used elections as an analogy. The only time you hear from some candidates is every two years or every four years (the election cycles in the US); once they get elected, they’re gone. Take the time and truly come into our communities, the communities where you really don’t want to go to, and you’ll find out that we’re smarter than you think.

Earning trust is just the beginning of it. It’s not the end of it. If you leave when your study is done, the impression you will leave behind is that you were only there to collect data, not trying to help the people.

Health Equity in Practice

Fortunately, we can point to one very good example. You already know: Who was dying the most from COVID at the start of the pandemic? Black and Brown people. Dr. Ala Stanford, who is a pediatric nurse, a nurse-doctor, and part of the Black Doctors COVID-19 Consortium, went into the Philadelphia neighborhoods where people didn’t want to go, gave the folks in that community the vaccine, and educated them. She went to all the big churches but, more importantly, she also went to the mom-and-pop churches, where people were willing to listen to her and take the vaccine because she looked like that community. She did it right. She specifically went to the communities where most people don’t want to be. She has since opened the Dr. Ala Stanford Center for Health Equity right in the heart of the community on West Lehigh Avenue in Philadelphia.

Change is constant whether we like it or not. Some people can feel challenged or even threatened by change. Everyone involved must understand that the changes we seek will take time and hard work. We must remain flexible, maintain an open mind, and recognize that these changes will not happen overnight. It will take years to undo all the unjust structural barriers that have marginalized and continue to marginalize communities of certain colors.

Everybody wants to jump on the bandwagon and say that they are allied. I say, like the great advocate for social change John Lewis: “How about you be my accomplice?”