Clinical trials are opportunities for patients to receive cutting-edge treatments and for researchers and healthcare professionals to gain insights on medical interventions that could improve health outcomes for illnesses and diseases. To get this important data, we need people of all genders, ages, races, and ethnicities. This will help us gather the most accurate information.
An ongoing issue with clinical trials is the lack of diversity among participants—particularly Black Americans. While several factors contribute to the lack of participation in research studies, one of the main issues is mistrust of the healthcare system, which leads to less-than-accurate data on how treatments can affect Black people.
A 2024 study published in JAMA Network investigated ways to increase cultural representation in clinical trials. The findings could help researchers better tailor their approaches to increase Black participation.
The study, led by Kevin Johnson, MD, MS, investigated whether culturally tailored video messaging could impact parents’ willingness to
enroll their Black children in clinical trials. Cultural tailoring involves changing messages to match the needs or preferences of a particular ethnic group. Part of the reasoning behind this study was research revealing significantly low participation rates of marginalized communities in children’s trials from 2011 to 2020.
“As an AI researcher, a science communicator, and a pediatrician, I was aware that there are historical reasons why many marginalized groups may choose not to have their data in the very models that could improve our access to care and for things like precision medicine,” Dr. Johnson tells BlackDoctor.org. “The motivation was how we can use other approaches to help incentivize people who may have been historically marginalized and/or believe that they shouldn’t trust healthcare systems.”
The study involved 125 participants (93% of whom were Black or African American) and compared registry enrollment rates after watching a generic video, a culturally tailored video, or no video, with or without a $25 gift card incentive to participate. The post-study analyzed the association of a monetary incentive with enrollment. Consenting participants were promised an ink pen for participating in the post-study.
The most revealing discovery from this study was the relationship between incentives, trust, knowledge, and the decision to participate in clinical trials. In the ink pen group, higher trust was associated with a greater decision to enroll (DTE). In contrast, trust wasn’t significantly associated with deciding to enroll for the gift card groups. This indicates that monetary incentives may override the role of trust in decision-making for Black participants in clinical trials.
“We don’t know the size of the incentive that flips people from not trusting and not enrolling to not trusting and enrolling because clearly the incentive doesn’t impact trust, it just is associated with an increased willingness to participate,” Dr. Johnson says.
The study’s findings suggest that trust alone is not the main factor influencing participation in clinical trials, especially when financial incentives are offered. These findings challenge the common assumption that mistrust is the most significant barrier Black people face when it comes to participating in clinical trials and highlight the role of structural and financial obstacles.
Dr. Johnson suggests that researchers collaborate with community members to understand what motivates certain groups to participate in clinical trials. “It would be useful to always consider engaging a community group before you do a study to tell you whether an incentive of some sort would be necessary to help certain groups of people participate,” he says.
While the study provides more insights into which approaches could increase minority participation in clinical trials, Dr. Johnson wants to perform this study on a larger scale to get more results. “Our next study will involve a larger population of children of various races and ethnicities so that we can better understand, tease apart, and develop recommendations around this idea of incentives being attached to consent,” he says.
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