Head and neck cancer clinical trials have a diversity issue. According to the recent study, “Diversity in U.S. Clinical Trials for Head and Neck Cancer: Are We Improving?” conducted by Boston University, head and neck cancer (HNC) trials from 2000 to 2023 showed a significant increase in White participants and a decrease in other racial groups.
Over the last ten years, this phenomenon has been especially surprising because it stands in contrast to ongoing efforts to promote inclusive access. Worsening representation is particularly problematic given that historical research has shown that Black people tend to be diagnosed with head and neck cancers—including throat, lips, mouth, and more—two to four times more than Whites. Prior research underscores the need for inclusive access to trials and treatments for these kinds of cancers, which have complicated racial and rural disparities.
“Clinical trials are designed to answer specific questions about safety, benefits, side effects, and whether some people benefit more than others,” Aleya Lyn, MS, BSN, RN, OCN, Clinical Trials Nurse at Memorial Sloan Kettering Cancer Center explains. Over the past 20 years, they found that White patient participation increased 6.1 percent, while the Black patient population increased only 0.8 percent. The Asian and Native-Hawaiian population decreased 3.1 percent.
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“Many clinical trials [that] lead to recommendations for standard-of-care treatment strategies are conducted in groups of patients who do not represent the full breadth of society,” explains Professor Kevin Harrington, Head of the Division of Radiotherapy and Imaging at the Institute of Cancer Research in London. “Increasingly, we understand that diseases can present with different clinical and pathological features in different ethnic groups. Furthermore, the way in which tumors respond to treatment and the side effects experienced by patients can vary considerably with ethnicity.”
Why we need diverse clinical trials
To develop sound and comprehensive treatment guidelines appropriate for all segments of society, Harrington says “it is imperative that attempts are made to offer recruitment to a diverse and representative cross-section of the population. In this way, both patients and their medical teams can have confidence that they are making the correct decisions in prescribing treatments.”
Trials teach researchers about everything from diagnostics, screening, treatment, prevention and supportive care at each stage. Skewed demographic inclusion means that people of color have disproportionate access to possibly life-saving medical care. Although trials come with risks, cancer trials can be particularly beneficial for participants. Even those who receive placebo or control treatments stand to benefit from top-notch medical care from a team of cancer specialists, who they may not have had access to were it not for the trial. Also, clinical trials cover most costs, lowering the financial barriers to accessing cutting-edge scientific treatment.
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What can we do about this?
These findings call for more research, perhaps from people outside of the medical field. It is unclear if the HNC cancer trials are the only ones affected by this disproportionality. And it is also unclear if non-White patients are disproportionately seeking trials or disproportionately unaccepted. If it is the former, that indicates low general interest or awareness about clinical trials among people of color. The solution may be a marketing fix rather than a medical one.
As of now, cancer patients heavily rely on their care team to alert them to clinical trials that might be suited to respond to their condition and cancer stage. Racial bias in medical care could be to blame for a low rate of referrals. Also, people may struggle to search for trials on their own. Proactively targeting communities of color may require a more direct marketing approach. Joining a cancer trial can be time-consuming and financially burdensome, especially if the trial site is far away from a patient’s support network and employment. Helping families better understand the risks and rewards of participation might take more effort than in years past.
As of today, there are over 18 million cancer survivors in the United States alone, but nearly 611,000 people die of cancer annually here too. If cancer patients of color are in fact seeking to participate in HNC trials at a proportionate rate, then the barriers to their acceptance merit further review. Identifying implicit bias in the eligibility criteria and admission process is crucial to improving overall cancer care for the future.
