Nationally, clinical trials have a diversity problem.
These research studies aim to evaluate the safety and effectiveness of new, sometimes life-saving medical products and therapies. But the usefulness of clinical trials hinges on who exactly participates.
Racial and ethnic minorities, among other diverse groups, tend to be underrepresented in clinical trials. It’s a reality that health systems and other stakeholders are working diligently to address, since an individual’s age, race, ethnicity and income may influence their response to different medications, vaccines and devices.
Without equitable representation, the findings from clinical trials are not as widely applicable as they should be, and access to new and often innovative treatments are limited. This feeds into the widening gap of poor health outcomes between higher-income White people and everyone else.
To gain new insight into the lack of representation in clinical trials, a team of research scientists and epidemiologists at Advocate Health Care and Aurora Health Care conducted a listening tour with community members who self-identify as Black, Hispanic or Asian. We discussed their feelings toward clinical trials broadly; whether they, their families and friends had experienced any barriers to participating in a clinical trial; and what health care systems may misunderstand about these barriers. The interviews ended with community members proposing tangible solutions for health care systems to implement to bridge the gap in participation.
Despite longstanding distrust in the U.S. health care system, rooted in medical experimentation on people of color, respondents said a lack of trust was not a deterrent to clinical trial participation. Rather, they pointed to a lack of information about medical conditions, potential treatments and available research.
So, what can we do about it?
We can start by increasing education around clinical trials and investing in health awareness. The community members we interviewed wanted to hear from health care professionals about the health problems that affect their communities and how to potentially access innovative treatments through clinical trial participation. But they didn’t want to hear from us only when their health problems are newly diagnosed. They wanted sustained engagement with their communities.
Similarly, we can also continue to meet people where they are. One respondent suggested: “If they (researchers) go to different things where you get a lot of Black participation every night, then have somebody get up and speak about these studies, about how it’s going to be helpful to your children, your grandkids, your future, your generation, it’s going to help. You’ve got to help them to trust you. So more exposure is better than anything. I don’t think it’s been exposed to our community that much.”
With more than 500 clinical trials currently underway in the Midwest, Advocate Aurora Research Institute has dedicated the past year to evaluating ways to integrate these community member suggestions into our day-to-day research operations. There are some promising solutions and the work is ongoing.
The lack of diversity in clinical trials is not a new problem. It took a long time to get to this point, and there are no quick fixes. But with International Clinical Trials Day on May 20, there is no better time than now to underscore the importance of clinical trials to the health of our communities while also reaffirming that we are taking on the necessary work to improve diversity in clinical trials so that we can achieve health, hope and healing for all.
Veronica Fitzpatrick, DrPH, is a research scientist with Advocate Aurora Research Institute, part of Advocate Health. Her work focuses primarily on health equity as well as maternal and child health.