When diversity in clinical trials is personal
How Adrelia's passion for diversity in clinical trials started close to home
September 22, 2020
Adrelia Allen wears many hats – she’s a clinical research manager, a mother, a runner and a mentor. And, importantly, she is also an advocate for underrepresented patient populations in clinical trials.
“It’s my personal passion – knowing that just within my circle of influence, it can be a challenge to convince others about the great work that is being done in clinical research and why diversity in clinical trials is so important,” says Adrelia.
Why is diversity in clinical trials so important?
Diversity in clinical trials helps to advance knowledge about the safety and efficacy of treatments in all people. While the makeup of our global clinical trial participants is largely diverse, we are focused on improving diversity in U.S. trials. In 2016, the U.S. Food and Drug Administration (FDA) issued guidance to help ensure that people of different ages, races, ethnic groups and genders are included in clinical trials. However, it is clear that this issue remains a significant challenge across the pharmaceutical industry.
Among the clinical studies leading to new therapies in 2019 in the U.S., minority clinical trial participants included
This may be for a multitude of reasons. In some instances, minorities may have logistical challenges or financial burdens, which may make it more difficult to take time to participate in a clinical trial. In other cases, minorities may be fearful or distrusting of how they will be treated in clinical trials.
In Adrelia’s personal experience, it was the latter. “When my father was diagnosed with prostate cancer, he was concerned he would be treated as a guinea pig, and it was a very real issue for him,” says Adrelia. “It’s hard to change someone’s mind when they’ve seen and experienced things that make them fearful of how they will be treated based on the color of their skin. You can’t brush off those concerns. You have to address them head on with information and education – and that’s exactly what I did.”
"I had to reassure him and really make him see – your rights are protected – you are protected.”
Adrelia Allen
Raising awareness with the broader patient and clinical research communities
Since then, Adrelia has been sharing this same message – beyond her father and beyond her circle of influence – with the clinical research and patient advocacy communities alongside Merck’s clinical trials team.
“A singular approach will not solve the challenge we face with the lack of diversity in U.S. clinical trials today – it has to be addressed from a much higher level alongside our peers and colleagues and within the communities where patients live,” explains Adrelia. “I am grateful to be part of Merck’s work in this space.”