Clinical research, inclusion and representation are critical for understanding health outcomes across diverse populations, yet historically, the LGBTQIA+ community and Black individuals have been significantly underrepresented.
According to recent studies, LGBTQIA+ individuals are often excluded or insufficiently represented in clinical research, with less than 5% of studies including sexual and gender minority participants. Similarly, Black Americans are underrepresented despite facing higher rates of certain health conditions like cardiovascular disease and diabetes.
This lack of inclusion further increases disparities in healthcare outcomes and limits research findings. While the FDA has guidelines promoting diversity in clinical research studies, implementation remains inconsistent.
Addressing these disparities requires focused efforts to ensure equitable representation, improve healthcare outcomes, and foster trust within marginalized communities. We confront this issue head-on by speaking with two of Acclinate’s NOWINCLUDED employees and members about this urgent need.
I’m Sara Beth, but everyone here calls me SB! I have worked in healthcare quality assurance/compliance for over a decade and joined Acclinate’s NOWINCLUDED team in June of 2023. I have spent much of my career working with companies on integrating diversity, equity, and inclusion into their workforce and overall strategic plan. When I was asked to join this team, I knew I had an extremely rare opportunity to combine those two skill sets and work for a company that has health equity at the core of its mission! Outside of my work life I am a mom to a six year old daughter! I enjoy exploring new cities with my partner and can always be found carrying a book with me wherever I go.
I’m Promise Bennett, a graphic designer for Acclinate’s NOWINCLUDED community! I wear many hats, but ultimately, I am a creative. I have a strong passion for storytelling and pushing Black culture forward. I was introduced to Acclinate’s NOWINCLUDED platform by an employee and decided to join the company because I was excited about what they were doing for Black people.
As members of the LGBTQIA+ and Black communities, how do you feel about participating in clinical research?
“I think it’s important for people of all identities to participate in clinical research. For me, it’s important to know that my community is included when healthcare decisions are being made. Through participating in clinical research, we have the opportunity to directly contribute to innovation that could potentially improve the health and wellbeing of our community. It has not always been a priority to include the voices of the LGBTQIA+ community, so I try to capitalize on any opportunity to do that!” says Sara.
Promise added, “Before working here, I would not have been open to clinical research. I’m still not fully open, but I am willing to learn more about available studies and possibly participate.”
How do you think companies could improve their clinical research process to be more inclusive of everyone?
Promise is eager to see companies improve their processes by investing more time in the phases of education and access. “They need to meet us where we are and educate us in an understandable manner. They must drop the jargon and engage in genuine, authentic conversations with us about clinical studies. That means sharing both the positive and negative aspects” she says.
Sara notes that the LGBTQIA+ community has, and still does, experience heavy bias and stigmatization within the healthcare system. She explains, “gender identity and sexual orientation were rarely – if ever – captured in the clinical research process, making our community essentially invisible. It was only in May of 2023 that the FDA removed the restriction on blood donation for some members of our community. I believe the way to improve inclusivity in the clinical research process is to show up for the communities you want to include. This applies to the LGBTQ+ community as well as the BIPOC community! Too often we are asked to participate or show up for companies that only show their allyship during Pride month. It’s time for researchers to show their allyship and support all year long. Knowing that a company actively contributes to my community and cares about our well being would make me more willing to participate in their research opportunities.”
We thank Sara and Promise for sharing their perspectives with us and hope our community members keep advocating for their voices to be heard.
Have you participated in a clinical research study? We’d love to hear your story.
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