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  • Communicating the Value of Race and Ethnicity in Research

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    Earlier this year, NIMHD Director Dr. Eliseo J. Pérez-Stable wrote a post for NIH’s About Science, Health, and Public Trust blog. This website aims to share strategies and best practices to help improve public understanding of how biomedical research impacts personal health. In his post, Dr. Pérez-Stable raises awareness about the vital role that race and ethnicity play in clinical research. Read the post in its entirety below.

    Until recently, researchers assumed that what they learned about White male participants could be safely applied to anybody, regardless of gender, race, ethnicity or other variables. We now know that this isn’t true. When you’re communicating about research results, it’s vital not only to explain how a study was done, but who was being studied.

    Unfortunately, racial and ethnic minorities experience more preventable diseases and poorer health outcomes—referred to as “health disparities ”—yet they are not included in research studies as often as White people are. This is true even though researchers who get NIH funding have been required since 1993 to report race, ethnicity, and gender of participants in their biomedical research. African Americans and Latinos make up 30% of the U.S. population but account for less than 10% of participants in genetic studies.

    We know now that when it comes to medical research, there is no standard or average human. No single group can truly represent us all. In fact, many differences have already been identified.

    The FDA has approved drugs which were proven to be safe and effective for overwhelmingly White study participants. However, we found out later that these drugs do not necessarily work the same for minority populations. For example, clopidogrel, an anti-platelet drug, is no better than a placebo for 75% of Pacific Islanders who take it. The most common asthma-controlling medications were approved by the FDA based on how they performed in studies that included mostly White people. But later studies showed that they often don’t work as well for Puerto Ricans and African Americans, who have the highest rate and greatest severity of asthma. Carbamazepine, a drug used to treat seizures and nerve pain, is more likely to cause Stevens-Johnson syndrome in Asians than in other racial groups.

    Despite the growing evidence that race and ethnicity play an important role in the risks for many diseases and responses to environmental exposures, my fellow researchers and I still devote much of our time to explaining why scientists should include more racial and ethnic minorities in their studies. Clinical research has the potential to help advance health for everyone. But for that to work, it must include people from all groups.

    Clinical trials of diabetes medication should include Mexican Americans and Puerto Ricans—populations with high rates of diabetes. Prostate cancer trials would be remiss if they fail to enroll African American men, who are twice as likely as White men to be affected by and die from the disease.

    Many studies do show differences in health outcomes between racial and ethnic groups. When we interpret these studies, we should also consider the underlying factors causing those discrepancies. At NIH’s National Institute on Minority Health and Health Disparities (NIMHD), we sponsor many researchers who study the various factors that influence health.

    The easiest reaction to a study finding a health difference between, say, African Americans and White Americans might be to think the difference is due to something biological related to race. Sometimes there is a genetic element; for example, people of African descent are more likely to have high blood pressure and lung cancer. But we know that the health disparities experienced by minority populations can have many other causes. People of different races and ethnicities often grow up in different cultural environments, with diverse diets and health practices. Economic opportunity is not evenly distributed among all races, and different populations have unique histories that can contribute to health differences today. We can’t work to reduce these disparities if we don’t understand the mechanisms underlying them. To do that, our scientific research must include those groups that have historically been excluded or underrepresented.

    The inclusion of minorities affects more than minority health and health disparities. It is also a question of social justice—and of good science. To be truly thorough and meaningful, our clinical studies must include diverse populations.

    When you write about a study, consider who is included. Did ethnic and racial minorities participate in the study? If not, why not? If the study population is overwhelmingly White, you should be skeptical. If the researchers found differences between people of different populations, did they consider all the reasons why such differences can occur, or just jump to a conclusion that it must be because the races are biologically different? By asking these questions, we can help improve clinical research and ultimately help end health disparities.

  • Partnerships, An Important Factor in Advancing Health Equity

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    Posted on

    By Eliseo J. Pérez-Stable, M.D.
    Director, National Institute on Minority Health and Health Disparities

    Each year in April, the Office of Minority Health at the U.S. Department of Health and Human Services (HHS) leads our sister HHS agencies in commemorating National Minority Health Month. This year’s theme, “Partnering for Health Equity,” is a sustainable message which we not only recognize this month but also put into practice all year long through our research, training, and outreach programs and activities.

    Over the last two and a half years, I have been leading this Institute in research to improve minority health and reduce health disparities in the U.S., as well as help guide other NIH Institutes and Centers on these issues. Our country is often described as a melting pot—representing people from all over the world. However, our research does not reflect the culture. We are continually trying to raise the bar.

    NIMHD’s commitment to funding multi-faceted minority health and health disparities research—and supporting underrepresented minority researchers—continues to address the gaps in access to high-quality health care, inclusion in research, and advancing knowledge of issues which affect minorities. Our work in these areas, along with other NIH Institutes and Centers, aims to improve the health of our nation, which is reflected in the health of all populations.

    National Minority Health Month provides not only a platform for our mission, but it is also a chance for us to raise the flag for health equity together with our stakeholders, including researchers, public health advocates, and community leaders. NIMHD has the esteemed honor of developing, shaping, and influencing the science of minority health and health disparities. In doing so, we are moving toward touching the lives of those burdened by health disparities. The objective this month is to join forces in efforts to improve access to high-quality health care and advance the health of everyone—through research which reflects the populations we serve.

    Through our research collaborations across NIH and externally, we are addressing diseases that disproportionately impact health disparity populations, such as HIV/AIDS, cancer, diabetes, and cardiovascular disease.

    Supporting efforts like the NIH All of Us Research Program is one way that we can help address these health problems. The All of Us Research Program is a historic effort to engage one million or more people in research. This program will allow us to gather information to improve our ability to treat and prevent disease based on individual differences in lifestyle, environment, and genetics. These and other factors, known as the social determinants of health, are essential to understanding the complexity of disease and identifying the most effective prevention and treatment strategies. NIMHD joins this effort to promote inclusion of populations historically underrepresented in biomedical research.

    Through partnerships like the NIH Minority Health and Health Disparities Strategic Plan, which is currently under development, we look forward to designing specific goals to address innovative research approaches, training to build the next generation of researchers in minority health and health disparities, capacity-building for research institutions focusing their efforts on minority health and health disparities, and inclusion of diverse populations in research studies. We also aim to build upon the community of scholars, advocates, and others interested in promoting health equity.

    NIMHD also partners with other NIH Institutes and Centers to enhance diversity in our biomedical workforce. For example, NIMHD actively participates with the NIH Medical Research Scholars Program (MRSP). MRSP is a year-long research enrichment program designed to attract medical, dental, and veterinary students with strong research interests to NIH. The goal of our partnership is to introduce the MRSP to students from diverse racial and ethnic backgrounds and encourage them to consider biomedical research careers.

    Our partnerships with external groups provide opportunities to promote health in communities across the nation.

    We collaborate with the Omega Psi Phi fraternity on a program called Brother You’re On My Mind (BYOMM). Encompassing workshops, community events, media engagement, and our BYOMM toolkit (which can be found on our website) allows us to help start conversations about mental health in African American men. NIMHD is proud to support this endeavor to help bring awareness of the mental health challenges associated with stress and depression.

    We also partner with the GENYOUth Foundation on their program, Fuel Up to Play 60 en Español that is designed to educate Latino students, parents, and communities about the importance of healthy eating and physical activity, create healthier school environments, empower students to choose more healthy foods, and encourage students to be active for at least 60 minutes everyday.

    Collaboration and partnership are at the core of NIMHD’s mission, and we look forward to continuing our efforts with NIH Institutes and Centers, HHS agencies, and our external stakeholders as we work together to advance health equity for all populations.