The Colors of COVID Town Hall Event: The Ethical Engagement of Minority Communities in COVID Clinical Research

In April, the Director of the Maryland Center for Health Equity’s Dr. Stephen B. Thomas (Dr. T), in partnership with FHI Clinical, pulled together a mighty team of experts for a frank conversation about COVID and how to encourage Brown and Black communities to participate in clinical research. The town hall-style discussion included COVID vaccine researchers, health professionals and community activists from across the United States, including FHI Clinical’s own Joy Toro, Claudia Christian and Latrina Watkins. In this post, we summarize what the experts said about where we are in the pandemic, what challenges still lie ahead and what ideas may provide us with solutions.

COVID check-in: Where are we?
Dr. T kicked off the session by asking the panel to weigh-in with a one-word answer to sum up their feelings on the current state of COVID.

…were just a few of the emotions expressed. While it seems things are better, the panelists made clear they feel the pandemic is far from over, and there is much work left to be done. A few panelist comments are summarized here:

Mike Brown, Barber and Manager of The Shop Spa, Hyattsville, MD, Certified Community Health Worker and Founding Member Health Advocates In-Reach and Research (HAIR): I’m cautiously optimistic. People are getting vaccinated, but many don’t have the same views about it. We have to pull them to do it. But, I look forward to the world reopening!
Latrina Watkins, Director, Clinical Operations, FHI Clinical: I’m excited and ready – ready to see friends, ready to see family and ready to get back to some sense of normalcy.
Ysabel Duron, Founder, The Latino Cancer Institute (TLCI): There is still an environment of fear around the virus and vaccine. Personal situations determine how people feel about the disease: Were you able to work during the pandemic? What kind of support system did you have? Were you hit hard where you live?
Claudia Christian, Senior Vice President, Global Clinical Operations, FHI Clinical: It’s nice to see that we are coming out on the other side. But I’m exhausted.
Challenges within the health care system

The panel conversation quickly moved to problems Brown and Black communities have when interacting with the health care system and why they have been historically reluctant to participate in clinical research. The FHI Clinical team had a lot to say, as summarized below:

Claudia Christian, Senior Vice President, Global Clinical Operations, FHI Clinical: A clinical trial is the way we study a product, therapy or vaccine in a very controlled environment so we can ensure a product works and is safe. Every step of the way is monitored, and an ethics committee oversees the process. Data from the trial is only good if there is an accurate representation of our society – so that we are giving back to our own communities.
Latrina Watkins, Director, Clinical Operations, FHI Clinical: Medications work differently across all ethnic groups. To know how things work in Brown and Black bodies, we have to be part of the research so that treatments support and benefit our communities.
Image_DoctorPatient
A short video illustrated the many challenges minorities may encounter when participating in clinical research and in getting health care, including:
  • Navigating a complex health care system
  • Lack of treatment alternatives and lack of knowledge to ask about alternatives
  • Lack of patient knowledge about how to ask for a second opinion if they feel they need one
  • Timing of treatment, transportation, testing requirements and financial obligations
Lack of trust in the health care system and clinical research by minorities is seen by the panelists as one of the largest challenges.

Joy Toro, Senior Director, Clinical Strategy, FHI Clinical: People say we (minorities) don’t want to participate in research, but that’s not really true. People are more inclined to participate after being educated – it just takes a moment to break it down into simple terms. But, we also have to consider the dynamic between the participant, the doctor and the trial. Oftentimes, there are racial undertones or unseen power dynamics. The key is to have cultural sensitivity to those situations. It helps if it’s someone that looks like you giving you the information, but it doesn’t have to be. It comes down to trusting someone you’ve seen in your community. Trust is the foundation.

Sandra Quinn, PhD, Professor and Chair of the Department of Family Science and Senior Associate Director of the Maryland Center for Health Equity, School of Public Health, University of Maryland (UMD): In a national survey, Dr. T and I (with the Maryland Center for Health Equity) asked Latino and African Americans, “What would motivate you to participate in clinical research?” We found that respondents weren’t being asked to participate and that altruism for future generations was a powerful motivator. But, these communities were worried. They don’t trust the system. How can we get health care to be more trustworthy?

William W. Ashley, Jr, MD, PhD, MBA, FAANS, Director of Cerebrovascular, Endovascular, and Skull Base Neurosurgery and Chief of the Division of Neurointerventional Radiology, Sinai Hospital of Baltimore and LifeBridge Health System: There is an idea that we get experimented upon and then the cure is used on a different group.

Yolanda Ogbolu, PhD, CRNP-Neonatal, FNAP, FAAN, Associate Professor and Chair of the Department of Partnerships, Professional Education, and Practice and former Director of Global Health, University of Maryland (UMD): All the interactions people have had with the health care system have failed them as a human being and led them to mistrust the system. They don’t feel like they can trust providers, so they don’t participate in clinical trials.

Ysabel Duron, Founder, The Latino Cancer Institute (TLCI): Often, there is a language barrier, so patients don’t feel listened to.

Solving the problem: A few ideas
So what’s the answer? How can we get more Brown and Black communities to trust and interact with the health care system and join clinical trials? How can the medical profession be seen as more trustworthy?

Joy Toro, Senior Director, Clinical Strategy, FHI Clinical: It’s important to have respect for people, and you must get involved in the community. You must also address various barriers to people participating. For example, we have sites that stay open in the evening and on weekends to accommodate more people and do outreach in local languages.

Ysabel Duron, Founder, The Latino Cancer Institute (TLCI): Community health workers are our bridge. These people are on the ground, involved in the day-to-day interactions in our communities. It helps when they share their experiences with the community.
We also need to solve some of the issues that get in the way of people participating in clinical trials and health care. Things like paying and arranging for childcare for check-ins and appointments, being able to take the day off from work, not having insurance and fears about being undocumented.
Carol Ritter, MD, Director of Women’s Minimally Invasive Surgery, Greater Baltimore Medical Center: Communication in groups is the key. People don’t know what questions to ask, but if we communicate in groups, people can learn from each other.
Ysabel Duron, Founder, The Latino Cancer Institute (TLCI): These groups become safe places to ask questions and get answers.

Sandra Quinn, PhD, Professor and Chair of the Department of Family Science and Senior Associate Director of the Maryland Center for Health Equity, School of Public Health, University of Maryland (UMD): We have to train our researchers to have dialogues and have system-wide programs. We can create community research advisory boards. Once we get out there and have conversations with people, the health care system and professionals become less scary, and people feel comfortable asking questions. It’s about building relationships.

Latrina Watkins, Director, Clinical Operations, FHI Clinical:: It all boils down to better community engagement. Do the research, and take the time to understand the community and put things in place to increase communication and participation.
Claudia Christian, Senior Vice President, Global Clinical Operations, FHI Clinical: We can’t overcommunicate right now. We have to stay present and push the information out. Each of us has the power to affect change.

As Dr. T points out, COVID presents us with an opportunity to demonstrate cultural sensitivity and awareness and to do a better job at recruiting diverse populations for clinical trials. And while there is still a lot of work to do, things are absolutely changing for the better.

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