According to the US Census Bureau, Hispanics constitute the nation’s largest ethnic or race minority. There are 55 million Hispanics living in the United States today. That number is expected to grow, reaching more than 119 million by 2060. In my previous post, Hispanics’ Health is Key to Your Own Strategic Future, I featured a report from the Centers for Disease Control and Prevention which paints a somber picture: the health status of Hispanic adults throughout the U.S. is consistently poorer compared to non-Hispanic adults. The sad reality is that a disproportionately high number of Hispanics are living with chronic conditions such as high blood pressure, diabetes, and cancer. What I did not know until recently is that, despite that the very health of the country going forward very much depends on the health of the Hispanic population, Hispanics make up only 1 percent of clinical trial participants in the United States. Incredible!
Digging a bit deeper into such disconcerting news, I found recent reports from the National Institutes of Health (NHI) indicating that minorities account for up to 30 percent of enrollees in NIH clinical trials. Hispanics, however, make up 7.6 percent of participants, compared to 15 percent of African Americans. Another report from the National Cancer Institute (NCI) indicates that cancer is the leading cause of death among Hispanics, accounting for 22% of deaths. While Hispanics are less likely than non-Hispanic Whites to be diagnosed with the most common cancers (lung, colorectal, breast, and prostate), they have a higher risk for cancers associated with infectious agents, such as liver, stomach, and cervix. Still, the report from NCI shows that out of more than 12,000 trials accepting participants in cancer clinical trials in the U.S., Hispanic cancer patients only make up 2 to 5 percent of participants. Here is why these facts are relevant:
- Without Hispanic participation in clinical trials, this important population is being left vulnerable to unforeseen side effects because various ethnic groups have different reactions to pharmaceuticals. Having a diverse trial population would allow researchers to study potential side effects in a more realistic way.
- To make things more complicated, there is so much variation in the cancer burden among Hispanics by country of origin, which is difficult to capture because some of the long-standing academic research has ignored that diversity, relied on the larger pool of available data on Mexican Americans, and extrapolated that data to other Hispanic groups. That myopic approach has resulted in skewed data addressing Hispanic health.
I believe that all of us, working together, can do a better job. Whether you are a healthcare provider, insurer, researcher, university, community advocate, or Hispanic leaders, I maintain that we all have a stake in boosting Hispanics’ participation in clinical trials. Here are some of the most effective ways to do that:
- Educate within the context of the Hispanic culture. The first step: you have to educate the population. In order to educate the Hispanic population, you need to know how to reach out. Blaire Borthayre, CEO of Hispanic Marketing Resources, in an article published by Applied Clinical Trials, said that while some may believe that reaching out to a Hispanic community might be as simple as handing out brochures translated in Spanish, cultural barriers often stand in the way. Building trust and focusing on the needs of foreign-born Hispanics is the key to success. According to Borthayre, the market segment that suffers from a tremendous void in services is the foreign-born Hispanic who has been in the U.S. for five years or less. Often, they have limited or no English skills. Most significantly, they have a poor understanding of American systems in general. These immigrants rely on friends and family members to explain or assist them with access to available services. To reach out, make sure your representatives have bilingual training on the standards for culturally and linguistically appropriate care. Only then will your efforts to promote understanding of the benefits of clinical trials gain traction.
- Seek first to understand. Be sensitive to the role that family and religion play in the decisions Hispanics make about participation in clinical trials. In an article published by The Nation’s Health, Dr. Jorge Gomez, MD, PhD, director of the National Cancer Institute’s United States-Latin America Cancer Research Network, said that some Hispanics may place a greater priority on faith than scientific data, and they may want to include family as a part of their medical decisions. In some Hispanic families, Gomez said it is typical for two or three family members to want to sit in on a doctor’s visit. Gomez also said that while this might seem like a barrier to a physician seeking one-on-one time with a patient, involving multiple family members is something clinical trial investigators must embrace if they want to recruit more Hispanics for clinical trials and get them to stick to treatment and follow-up visits.
- Build trust. A research study conducted by the University of South Florida found that fear is one of the leading causes for Hispanics to avoid participating in clinical trials. Hispanics are especially wary of side effects; according to the study, Hispanics perceive themselves to be at a greater risk than Whites when participating as research subjects. The number of participants who recalled unethical clinical trials involving contraceptive testing shows this mistrust of research by the Hispanic community. These experiments, which caused an increase in sterility among many Puerto Rican women, may have contributed to the existing fears that are commonly shared among Hispanics. Build trust by engaging with the Hispanic community all year round, not just when clinical trial participants are needed. Demonstrate genuine interest in their well-being by providing timely and effective health-related education about the risks and the benefits clinical trials will have on their own prospects for better, healthier lives.
The health of the Hispanic population in the United States is linked to our collective health as a nation.
With a growing Hispanic population, there may be more cases of cancer and chronic disease, and physicians may not know about appropriate therapies or clinical intervention because there is not adequate information. Having more Hispanics participating in clinical trials is key to better drugs and treatment. I agree with Venus Ginés, MA, an instructor on cultural competence and health literacy at the Baylor College of Medicine. Ginés said that Hispanics are willing to participate in clinical trials if they are given two things: communication and information. Seventy-five percent of Hispanics would participate in a clinical trial if their doctor recommended it, and 38 percent of Hispanics said healthcare providers have a responsibility to inform their patients about clinical trials. Building a sustainable path to better health for the Hispanic population is within reach. By educating, understanding, and building trust we all have an opportunity to enhance the lives of millions of Hispanics in our country. Salud!