Lessons on Improving Clinical Trial Diversity from a Community Leader

Fatima Karwandyar is a community leader and advisor to CRA.

For too long, minority groups have been underrepresented in clinical trials, and the past year of living amidst a pandemic illustrated why this is a problem. The pandemic heightened awareness among the general public of health disparities among minority populations. Early on it took center stage when the data demonstrated that people of color were contracting and dying at higher rates to coronavirus. Even before vaccines were approved and distribution was on its way, conversations had been taking place about vaccine apprehension among these same populations. Public health officials and local health providers became hyper focused on addressing health inequity.

One way to address health disparities is to engage diverse populations in clinical solutions that can prevent sickness. While the subject can be nuanced since individuals are different, there are some clear themes on how to engage underrepresented groups in clinical trials.

At Clinical Research Associates, we were aware of the low representation among minorities, and knew we needed to act. Our approach was to focus on the “how” to engage these diverse groups, while simultaneously being aware of “why” some groups would be hesitant to participate. For example, we understood that Black Americans would be hesitant in part because of the unethical study of 400 men in a syphilis trial known as the Tuskegee experiment from 1932- 1972. It became unethical when penicillin became widely available to treat the disease, yet the men were not offered it. Rather than ignoring the issues, we addressed them frequently, openly, and honestly in our public messaging.

We did this by bringing information to communities directly. We identified local organizations trusted by the constituents they serve, like The Hispanic Family Foundation, Kurdish Professionals and The Muslim Advisory Council. Since much of the communication from these groups is mass distributed through their constituent services, we were able to reach large audiences that had never heard directly from a clinical researcher before. We complimented this organic outreach with earned media, garnering attention from local broadcast and print journalists.  We found that many people were starving for the information we were sharing, but had never before knew how to access it.

Accessibility is a facet of sharing information that is often overlooked. Too many clinical research sites assume that everyone is closely tuned to their every study, but this is not the case. Most people have no idea how clinical research works, so we need to level with them, meet them where they are, and be ready to engage them however they feel most comfortable. In this case, we delivered the information directly to the local community by partnering with these local organizations through events where the information came to them.

A common reaction from the organizations and the participants who attended was appreciation. They were grateful to learn about how clinical trials are conducted and the importance of all individuals participating in clinical trials. As the promotion of vaccines becomes widespread to address the coronavirus outbreak, they know that they can thank a clinical trial participant that looks like them.

Trust is also at the forefront when communicating new information or addressing misconceptions, especially in the case of clinical trials. The local organizations and their leaders are already trusted messengers within their community, which helped us leave a lasting message. For example, The Hispanic Family Foundation is a respected resource for Hispanic Nashvillians, so we partnered with this group and the Metro Health Department to hold a public forum on clinical trials. The forum took place in Plaza Mariachi, a mall which is frequented by the Hispanic community. We promoted the event through Spanish radio and on the organization’s social media channels in Spanish and English. We developed programming in collaboration with the organization centered around education about clinical trials and addressing all questions from the audience. In addition, we were able to garner their trust with our medical director, Dr. Stephan Sharp, whom has more than two decades of experience conducting clinical research studies. The program was designed as a way for trusted leaders to share information and improve public health, not as a simple trial recruitment event. The trust established between the organization and CRA allowed a level of comfort where participants actively engaged in the forum.

Clinical trial enrollment, a topic that remains unknown or highly misrepresented to many, can be developed into a simple concept: healthcare needs to account for diverse populations to address health inequity. One way health inequity can be addressed is through the development of clinically safe drugs that is more representative of our society.

Fatima Karwandyar is a healthcare technology professional and community leader. As a native Nashvillian, she has worked with numerous non-profits including the Tennessee Immigrant Refugee Rights Coalition and FiftyForward. In 2016, she was recognized by the Nashville Chamber of Commerce as an Emerging Leader Finalist for her advocacy work. She believes inclusion and equity are central to improving the lives of others. She has served as a diversity recruitment advisor to Clinical Research Associates since 2020.

Read More:

Read about CRA’s recruitment and retention strategies here.

CRA was featured in NPR Marketplace for its work with the Hispanic Family Foundation. Read more here.

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