Diversity in Clinical Trials: Where Do We Stand Today?
Clinical trials are designed to accurately capture the effectiveness and safety of a potential new treatment. But when clinical trial participation doesn’t reflect real-world populations, trial results aren’t as meaningful – sometimes for the patient groups that need the treatment most.
Diversity in clinical trial participation has been a much-discussed topic for years. And at first glance, it may appear that the problem has largely been solved: the participant population for all NIH populations combined generally matches the makeup of the U.S.
But as we discuss in our new white paper on diversity in trials, when you drill down into particular condition areas and populations, significant discrepancies continue to exist. These participation gaps can lead to treatments that simply don’t work for all patients.
“The differences in our needs — in our metabolism of and response to drug compounds in some instances may prove to be negligible,” says Allison Kalloo, Founder of Clinical Ambassador and iParticipate and featured in the white paper. “Or they could prove to be significant. The point is we just don’t have enough information to know.”
Patients who lack access to clinical trials are also cut off from the chance to receive the newest potential care options for their condition, further deepening health disparities.
Acknowledging the need for more diverse trials is one important step, but it’s also important to understand the reasons behind the discrepancy. One common belief around the lack of diversity in clinical trials is that people of color don’t trust research because of a troubled legacy, particularly the inhumane trials conducted at Tuskegee.
One surprising finding from our research was that lack of access, rather than trust, actually tends to be a stronger factor in a participant’s decision to join a trial. Often, a diverse group of patients are simply not asked to take part. This can be because patients from low-income areas may have less access to care from specialists, who tend to be more likely to share trial opportunities. It may also stem from limited efforts to reach patients where they are, such as through advocacy organizations that work directly with minority communities.
On the positive side, diversity in trials is improving. And there are many fantastic organizations working every day to connect patients of color with trial opportunities. Download our white paper to learn more about these efforts, the progress we’ve made, and where we can go next to ensure all patients have access to treatments that work for them.
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Post by Nancy Ryerson -
Nancy Ryerson is a digital communicator with experience in content, marketing, and social media in the healthcare space. She currently writes for clinical researchers and patients at Antidote, a digital health startup that connects patients to research through an innovative clinical trial search tool. Prior to joining Antidote, she spent three years at The Michael J. Fox Foundation for Parkinson’s Research, where she communicated research updates and clinical trial opportunities to the Foundation’s social media community of 750,000+ followers.