Black patients remain underrepresented in clinical trials, despite facing disproportionately high rates of chronic and life-threatening conditions such as cardiovascular disease and diabetes. In fact, according to the National Cancer Institute, “Black people make up about 14 percent of the U.S. population but only 5 to 7 percent of clinical trial participants.” This gap is often framed as a matter of patient hesitancy, but in practice, it reflects a more complex set of structural, informational, and clinical dynamics.
Healthcare providers play a central role not only in treatment but also in awareness around these research opportunities. Insights from Stephen M. Ansell, MD, PhD, Enterprise Deputy Director of the Mayo Clinic Comprehensive Cancer Center, and Leigh Turner, PhD, Professor of Health, Society, & Behavior at the University of California, Irvine, and Director of the UCI Center for Health Ethics, highlight how provider behavior, communication, and referral patterns directly influence clinical trial participation. Together, their perspectives underscore a critical point: improving equity in clinical trials begins inside the exam room.
Underrepresentation in clinical trials has many root causes. Many patients are never told that a clinical trial is an option, particularly if they receive treatment in healthcare settings not directly affiliated with research institutions. This lack of exposure is compounded by broader access issues, including geographic limitations, financial constraints, and limited familiarity with how trials work.
“There are many reasons why patients are unaware of clinical trials for which they are eligible to participate or are aware of such trials but decide not to participate in them,” Dr. Turner says. “It is common for patients to be unaware of such trials because they are not told about this option by their primary care provider or specialist clinicians.”
When patients are not informed, participation becomes unlikely by default. Dr. Turner further emphasizes that access to care itself plays a role in this dynamic. Patients who receive care in facilities without active clinical trial programs or without established connections to institutions that offer them are less likely to learn about these opportunities. Although tools such as ClinicalTrials.gov and BlackDoctor’s Clinical Trials Resource Center exist, they are not easily navigated by most patients, particularly without guidance from a provider who can interpret eligibility criteria and relevance.
In addition to awareness gaps, there are also practical barriers that disproportionately affect Black patients and other underserved populations. Travel requirements, time away from work, and the cost of lodging or transportation can all make participation feel unrealistic, even when the trial itself does not charge for treatment.
Fears about safety and side effects, as well as historical mistrust, also shape decision-making. For some patients, reluctance stems from the fact that clinical trials may involve experimental treatments with unknown side effects. For others, there is a broad skepticism about medical research. These concerns are not abstract; providers can overcome them by presenting factual information within the context and purpose of clinical research.
Providers serve as the primary gateway through which patients learn about clinical trials, and how these opportunities are framed can significantly influence patients’ interest. Also, providers must determine whether a patient is a strong candidate. If they don’t, patients may never know that a trial was an option in the first place.
“The reason why patients may be unaware of clinical trials often differs from the reason they choose not to participate in clinical trials,” Dr. Ansell says. “Lack of awareness related to clinical trials is often due to providers not presenting a clinical trial as an option when seeing a patient.”
This initial omission has lasting consequences. Without early exposure to clinical trials as part of the treatment landscape, patients are more likely to perceive them as unfamiliar or risky when they are eventually introduced. Dr. Ansell emphasizes that clinical trials are not peripheral — they are central to how new treatments are developed and refined.
“Clinical trials are commonly testing new treatments, or treatment combinations, that may become the standard of care in the future,” he explains. “Primary care providers can reassure patients that there is always a sound rationale for the treatment being tested, and the protocols used to administer the treatment require stringent monitoring and oversight by the healthcare team to ensure that treatments are given safely.”
This reassurance is critical in addressing concerns about safety and uncertainty. Patients often worry about the risks associated with investigational treatments, but those concerns can be mitigated when providers clearly explain how trials are designed, monitored, and regulated.
“Patients will always give informed consent before receiving any treatment to ensure that they know exactly what will happen,” Dr. Ansell says. “They will also be kept apprised of new information gained from the study, particularly if this is associated with any new unexpected effects.”
By framing clinical trials as structured, monitored, and patient-centered, providers can shift the conversation away from fear toward informed consent and empowered healthcare decisions.
Provider referrals are one of the most significant determinants of clinical trial participation, yet they remain uneven across patient populations. Identifying a relevant trial requires not only knowledge of the patient’s condition but also familiarity with available studies, eligibility criteria, and institutional networks. Without provider guidance, most patients are unlikely to navigate this process successfully on their own.
When referrals do not happen, the consequences are immediate and measurable. “Should a patient not be referred for a clinical study by their provider, the likelihood that they would be treated on a clinical trial is extremely low,” Dr. Ansell adds.
Dr. Turner says that “Provider referrals play an important role in determining whether patients are told about clinical trials and given opportunities to receive meaningful information before deciding whether to participate in such trials.”
In communities where access to specialists or research institutions is limited, these referral pathways may not even exist. Dr. Turner notes that “the lack of direct provider referrals can result not only in the exclusion of individual patients from the possibility of participating in clinical trials, but in exclusion of entire communities from opportunities to consider enrolling in clinical trials.”
Referrals are more than a procedural step — they gatekeep access. When providers proactively share relevant trials, they create pathways that might not otherwise exist.
Improving recruitment among Black patients and other underrepresented groups requires more than increasing the number of available trials. It requires a shift in how providers communicate about research, address concerns, and build trust over time. This begins with recognizing that mistrust is not a barrier to be dismissed, but a reality to be acknowledged and addressed directly.
“Primary healthcare providers can alert patients to the general possibility of participating in clinical trials and also provide their patients with information about what specific clinical trials might be available to them,” Dr. Turner says. “Whatever the reasons for patients’ attitudes toward clinical trials, primary care providers should try to address such concerns in an understanding and informed manner.”
This approach prioritizes transparency and patient autonomy. Rather than positioning clinical trials as inherently beneficial, Dr. Turner cautions against oversimplification. “As a general rule, healthcare providers should avoid describing clinical trials as a high-quality care option,” he explains, emphasizing the importance of clearly distinguishing between research and standard care. Patients must understand what is being tested, what risks are involved, and how participation differs from conventional treatment.
This level of clarity is essential for informed consent, particularly in communities where historical experiences have shaped perceptions of medical research. Trust is built not through persuasion, but through consistent, accurate communication that respects patients’ concerns and decision-making processes.
One of the most persistent misconceptions about clinical trials is that they are a last resort — an option reserved for patients who have exhausted all other treatments. This framing not only limits participation but also delays consideration of trials that may be appropriate earlier in the course of care.
“Clinical trials are typically testing cutting-edge treatment options and are available at all points across the patient care spectrum,” Dr. Ansell says. “While some clinical trials are available for patients who have failed many other therapies, many clinical trials are available as first-line treatment.”
This broader perspective is essential for both providers and patients. By presenting clinical trials as part of a continuum rather than a final step, providers can help patients evaluate them alongside standard treatments rather than after them.
“All of these treatments are seeking to improve outcomes beyond [those] seen with current standards of care,” Dr. Ansell explains. “Healthcare providers can explain this spectrum of clinical trial opportunities and help patients recognize that participation in a clinical trial may provide early access to the potential standards of care of tomorrow.”
For Black patients, who have historically been excluded from both clinical research and the benefits it produces, this shift is particularly important. Expanding access begins with expanding awareness. Providers make all the difference.
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