Clinical trials play a critical role in advancing medicine, but enrollment is only part of the equation. Retaining participants through study completion is equally important. While researchers have made efforts to increase representation in clinical research, many studies continue to face challenges in keeping participants engaged over time, particularly Black men.
There is rarely a single reason participants disengage — medical mistrust, work obligations, transportation challenges, limited support systems, and communication gaps can all contribute to withdrawal from a study. Understanding these barriers is essential, especially as researchers work to ensure clinical trial findings reflect the communities most impacted by health disparities.
“When the ‘why’ is not understood, it is very difficult to help a patient through a clinical trial,” said Andrae L. Vandross, M.D, of Texas Oncology. “Patients need a robust informed consent process that prepares them for what participation will actually involve.”
By identifying why Black men leave clinical trials early and implementing strategies to support participants throughout the research process, providers can help improve retention and strengthen the quality of clinical research.
Retention refers to a participant’s ability to remain engaged in a clinical trial from enrollment through study completion. While recruitment often receives significant attention, retention is just as critical to a study’s success.
When participants leave a trial early, researchers may lose valuable data needed to evaluate a treatment’s safety and effectiveness. High dropout rates can also make it more difficult to understand how therapies affect specific populations, including Black men who have historically been underrepresented in research.
For providers and researchers, retention is not simply about keeping participants enrolled. It is about ensuring patients receive the support they need to navigate the study while contributing meaningful data that can improve future care.
The decision to leave a clinical trial is often influenced by multiple factors. According to Dr. Vandross, one of the most overlooked realities is that participation in clinical trials can be extremely demanding.
“Clinical trials can be labor-intensive on the part of the participating patient,” he explained. “This includes many clinical visits, blood work, imaging studies, biopsies, and other testing that may require extra travel or effort.”
For many Black men, competing responsibilities can quickly become barriers to participation. Patients who work full-time may struggle to attend frequent appointments, particularly if missing work could jeopardize their income or health insurance coverage.
Beyond scheduling and work obligations, support systems also play an important role. Without family members or friends available to assist with transportation, scheduling, or symptom management, participants may find it difficult to keep up with study requirements.
Medical mistrust can create additional challenges. Even when concerns are not explicitly expressed, Dr. Vandross says mistrust can influence a participant’s willingness to remain engaged throughout the research process.
“I have found the medical mistrust, even when not explicitly stated, is an insidious barrier to enrollment and ongoing participation in clinical trials,” he says.
Improving retention requires more than enrolling participants. It requires creating systems that support them throughout their clinical trial journey.
One of the most effective approaches is shared decision-making. Dr. Vandross encourages participants to view themselves as active partners in the research process rather than passive subjects.
“Much of clinical trial participation can seem unidirectional, but I often remind my patients that their feedback is needed to provide optimal care,” he said.
Consistent communication can also make a significant difference. Regular phone calls, appointment reminders, and proactive conversations about potential side effects can help participants feel supported while identifying barriers before they lead to withdrawal.
Dr. Vandross also emphasized the importance of involving trusted support people when appropriate. In some cases, spouses, family members, or close friends can help participants manage symptoms, navigate appointments, and remain engaged in their care.
Researchers may also improve retention by offering flexible scheduling, transportation assistance, and clear explanations about what participants should expect throughout the study.
Trust is not built during a single conversation. Instead, it develops through ongoing communication, transparency, and genuine concern for a participant’s well-being.
Dr. Vandross believes that providers must make it clear that patient care, not data collection, is the priority.
“We must make sure our patients understand that their medical care and well-being are a priority, and we are not just trying to sign them up for a study and collect data without any regard to their experience,” he said.
Acknowledging the historical reasons many Black communities approach research with caution can also help strengthen trust. Rather than avoiding difficult conversations, providers should create space for questions and concerns and be transparent about risks, expectations, and participants’ rights.
As a Black physician, Dr. Vandross said he remains mindful of how historical experiences may shape perceptions of the healthcare system and recognizes the importance of addressing those concerns directly.
Ultimately, retention begins long before a participant misses an appointment. It starts during the first conversation, when providers establish trust, clearly communicate expectations, and demonstrate a commitment to supporting patients throughout the research process.
“We have to meet them where they are,” Dr. Vandross said. “With some patients, you need a lot of trust building in order for them to engage in a way that is beneficial for their overall care.”
As researchers work to improve representation in clinical trials, retention remains a critical part of the equation. By prioritizing trust, transparency, and patient-centered support, providers may be better positioned to keep Black men engaged throughout the research process and ensure studies better reflect the communities they aim to serve.
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