The evolution of breast cancer management—and cancer management overall—has rapidly changed over the past several decades. As a result, patients now face a myriad of treatment options. For example, should a person at increased risk for breast cancer take the drug tamoxifen as a means of preventive care? If someone is diagnosed with breast cancer, should they opt for a lumpectomy (removal of just the tumor) instead of a full mastectomy? Should they take tamoxifen instead of having chemotherapy after surgery to prevent recurrent breast cancer? Should a patient ask their surgeon to sample a few nodes using a technique called a sentinel lymph node biopsy? Or should they undergo an axillary lymph node dissection and have 20 lymph nodes tested, which could increase their risk of arm swelling or lymphedema?
Breast cancer patients face these questions not because their doctors are guessing—but because of clinical trials. For some people, clinical trials can be a ray of sunshine, particularly for those who have limited options. For others, they are approached with suspicion—that they won’t receive the best care and will be treated like a “guinea pig.”
What is a clinical trial? The World Health Organization defines a clinical trial as any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes. Often, patients are randomized, meaning which group or treatment they receive is a “luck of the draw”. That’s because researchers want to draw conclusions from two groups that are equal in every way.
While clinical trials have been extremely effective in advancing the treatment of cancer, only approximately 3 percent of Americans participate in clinical trials, an exceedingly low proportion. As Bob Kirsch recently reported for City Limits, minority groups have even lower representation rates—with African-Americans among the lowest at 1.3 percent, despite the disproportionate burden of mortality among this population from cancer.
Why is it important for underrepresented minorities to participate in clinical trials? As an African-American surgical oncologist, I firmly believe all patients should be enrolled in a clinical trial, if eligible. Most importantly, patients are more closely monitored when they are participating in a trial.
Also, if those of us in the medical community are to better understand the mechanisms of medical interventions in different ethnic groups, we need better representation in trials. Most cancer-focused clinical studies follow national trends — and are underrepresented in minority groups.
Given their importance, patients may choose to enroll in a clinical trial to help advance oncology treatment, or to receive a new drug that may extend their survival. Whatever the reason, clinical trials need to be more representative of minority populations. Which means we need to do more to recruit minorities into clinical trials.
How can we achieve this? It can be approached from several angles; there’s no “one size fits all” answer. If a cancer center sits within or near a minority community, it should build bridges with that community. One way is meet regularly with community and religious leaders and explain the purpose of clinical trials and the trials they wish to open. Community leaders can provide advice on how to engage patients, gain trust and possibly serve as an entry point for clinical trial recruitment.
Patient navigators are extremely important, as well. These are usually lay people, often from a specific community who are trained to explain and educate patients about clinical trials. They also can serve as valuable liaisons between the community and the academic center. Patients may be more likely to trust a navigator—and the navigator can answer any questions patients may have.
In our program, the Beatrice Welters Breast Health and Navigation Program at NYU Langone Health, our navigators speak different languages; this proves useful as we encounter many New Yorkers for whom English is not their primary language. Having someone that looks like you and speaks your language builds trust. We don’t want to exclude anyone from a study because of a language barrier.
Equally important is to engage community healthcare providers. Build relationships with them and explain clinical trials to them. Primary care providers often have a strong level of trust with their patients, and this will help patients understand more effectively how a clinical trial may be a good option for them.
Lastly, and more long-term, we need to invest in what I call “the pipeline of talented minorities” – particularly those interested in careers in medical and surgical oncology. This means supporting programs in middle school and high school that spark interest in medicine, and which provide student mentorships all the way through to college and beyond.
More medical schools also are recognizing that the cost of tuition is becoming prohibitive for certain individuals. Tuition-free education – like the program NYU School of Medicine introduced for its students earlier this year—or debt-free and loan forgiveness programs would be beneficial in freeing students to make career decisions based on their passion, and not on financing future medical school debt.
Cancer treatment is most successful when a patient feels they are part of a multidisciplinary team. In addition to promising treatments—like innovations in personalized medicine that is driving cancer treatment today—we need to move beyond the “ivory tower”. The persistent health inequities we see can’t be solved by waiting for patients to step inside our hospitals. Funding programs that allow physicians and other health providers, including navigators, to build relationships with community providers, community leaders and the community in general will pay dividends in reducing health disparities.
Kathie-Ann Joseph, MD, MPHis an Associate Professor of Surgery and Population Health at the NYU School of Medicine/Perlmutter Cancer Center at NYU Langone Health and the Chief of Breast Surgery at Bellevue Hospital.