“Black lives matter.” “Blue lives matter.” “All lives matter.”
These are slogans associated with recent events that speak to the value of life from differing vantage points. It’s unfortunate that these conversations still need to be had regarding systemic biases and inequalities that are pervasive throughout all segments of the human experience. What must be understood is that civil rights is more than a social issue; it is all-inclusive, and health should not be left out of the equation.
In spite of the advances in health care and increased awareness and understanding of diseases, health disparities are still experienced by many in this country. Minorities are affected by many chronic diseases at higher rates and experience disproportionately increased disease burdens from cancer, premature death and higher infant mortality when compared to the majority. Yet they continue to be underrepresented in the research that leads to the discovery of treatments and cures.
Specifically, minority participation in clinical trials is essential and much improvement is needed. Clinical trials/research leads to medical products and treatments that will be ultimately used by the general population. Because people of different ages, races, and ethnicities may react differently to medical products, study participant diversity is important.[note]FDA fact sheet https://www.fda.gov/ForConsumers/ByAudience/MinorityHealth/ucm570482.htm[/note]
Terry C. Davis, PhD, professor of medicine and pediatrics at Louisiana State University Health Sciences Center and Feist-Weiller Cancer Center, said during a press conference, “Despite all of this cutting edge, very exciting, wonderful research, [fewer] than 5% of cancer patients are currently enrolled in a clinical trial and [fewer] than 10% of these people are minorities. We must have diverse participation to identify how specific drugs and treatments are most useful for different people.”[note]https://www.healio.com/hematology-oncology/practice-management/news/online/%7B6331d371-7b6a-49c4-bb2e-e0a92c8fcbe0%7D/survey-minorities-underrepresented-in-clinical-trials-but-want-to-participate[/note]
Diversity both for researchers and clinicians is also important. Only about 7% of all NIH R01 grants are awarded to African-American or Latino primary investigators. Among medical school graduates in 2014, 5% were Latino, 5.5% were African American, and less than 0.002% were American Indian. “This is a crisis,” Davis added, especially since minority physicians are typically willing to see more uninsured and Medicaid patients, and minority medical students have a greater commitment to work in underserved areas.[note]https://www.medpagetoday.com/meetingcoverage/additionalmeetings/71987[/note]
The reasoning behind low minority participation in research is complex and many factors need to be addressed in order to increase inclusion of underrepresented populations in research.[note]Hamel et al, Barriers to Clinical Trial Enrollment in Racial and Ethnic Minority Patients with Cancer. Cancer Control, 2016,; 23(4):327-337[/note]
Lack of resources at the system and individual level as well as perceptions of distrust and implicit bias towards minority patients are barriers that still exist. Educating and informing clinicians, researchers and patients about the importance of clinical research and the availability of clinical trials is a good place to start.