According to new census population projections, the U.S. will become ‘minority white’ by 2045. During that year, whites will comprise of 49.7 percent of the population, and more than 50 percent will be Hispanic, black, Asian and multiracial. Yet despite the passage of the National Institutes of Health Revitalization Act in 1993, which requires clinical trials to include more minorities and women, there is still far too little racial and ethnic diversity in clinical research.
“Future population shifts will only magnify the negative impact of the disparity in clinical research, and this will also have implications on precision medicine,” Kathleen Starr, managing director of behavioral insights at Syneos Health, said during an engaging session on How to Boost Racial, Ethnic and Gender Diversity in Clinical Research.
If studies lack diversity, we’ll lack a clear picture of whether a treatment will work in all populations or what side effects might emerge in one patient population compared to another. There’s also the moral obligation to help all patients, regardless of their backgrounds.
This clinical research disparity is particularly worrisome when it comes to treatments for diseases that are more likely to affect marginalized racial or ethnic groups. Respiratory disease, for example, disproportionately affects African Americans, yet minority subjects were included in just 1.9 percent of studies.
Dana Dornsife, founder and chairman of the board at Lazarex Cancer Foundation, acknowledged that there is no one-size-fits-all solution for reaching more diverse participants, but progress is being made. Providing financial assistance to families and breaking down language and cultural barriers could help boost minority participation in clinical trials.
Education and community outreach efforts can also help. Sometimes, simply taking the time to get to know a patient and asking questions will help build trust. Stephanie Monroe, executive director of African Americans Against Alzheimer’s, detailed small steps that can help make health care professionals more approachable and trustworthy. Simply asking a patient to show up each month for a treatment rather than telling them to, for example, could help attract and retain minority patient populations.
The chat concluded with the recognition that efforts to reach a diverse patient population certainly shouldn’t begin when a patient is sick and is a candidate for a clinical trial. Instead, the outreach and education should begin many, many years earlier.
“It all comes back to cultural competence and working to find that bond with people across cultures,” said Fabian Sandoval, CEO and research director for Emerson Clinical Resource Institute.
Learn more about BIO’s diversity and inclusion initiatives at www.rightmixmatters.org.