According to the latest demographic information culled from the 2010 U.S. Census, the Hispanic population now constitutes roughly 16% of the nation’s inhabitants, yet Hispanics’ participation in clinical research studies ranks disproportionately low in comparison to their overall percentage of the population. Every year, some 260,000 Americans volunteer to take part in medical research studies; however, Latinos represent less than five percent of those who participate. Given that demographers expect the U.S. Latino population to triple by the year 2050, researchers must take steps to get Hispanics actively involved in clinical studies by pinpointing barriers that prevent Latinos from participating in research and developing strategies to increase this population’s access to and representation in medical research.
A diverse sample of participants is of great importance to investigators because some ethnic groups react differently to certain medications and therapeutic interventions. A lack of participation by minority groups in clinical trials leaves populations open to potential unexpected side effects. Regardless of whether ethnicity influences the effectiveness of a specific medication or treatment, clinical researchers must be sure they have thoroughly evaluated the possibility before moving on to the next phase of their research.
Why Don’t Hispanics Participate in Medical Research?
A number of reasons for Latinos’ low participation rates in clinical studies have been cited by researchers:
- Hispanic patients and their caregivers generally have little understanding of what is involved in a clinical trial. In addition, limited information tailored specifically to the Hispanic community about clinical research studies exists.
- Latinos are often fearful of new drugs or treatments, and they are wary of being used as guinea pigs.
- Many Hispanic patients stated they would not take part in medical research due to psychological reasons such as depression or denial (i.e. if they don’t participate in the clinical trial, they don’t have to face their illness).
- Many Latinos also expressed concern about the costs entailed by the treatment(s) they would receive as part of the study.
How to Increase Participation by Hispanics in Clinical Trials
Community outreach and education about clinical research trials are vital to increasing participation rates among Latinos. Ideally, physicians—who’ve already successfully established a relationship of trust with their patients—should be the ones to initially present the idea of taking part in a clinical research study. The doctor can act as a resource for Hispanic patients who tend to have limited information about this treatment option.
It’s important to translate brochures, clinical documentation and consent forms into Spanish in a culturally appropriate manner to help improve understanding among potential study participants. People will feel more comfortable if they’re offered literature in the language that feels most familiar to them. Studies show that participants also demonstrate greater willingness to participate in clinical trials if the researchers—regardless of their ethnicity—speak Spanish.
Lastly, Latinos usually demonstrate greater willingness to participate in research studies if they receive a direct health benefit (for example, free blood pressure or diabetes screenings), if they see a measurable benefit to the Hispanic community, and if they can participate in the study on weekends rather than during the workweek.