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MPHA NPHW Blog Post - April 12, 2020

The need for diversity in research studies is important now more than ever

The COVID-19 pandemic is beginning to expose the vast disparities present within the United States. While the recent outrage is warranted, it’s something that many public health and medical professionals have been warning about for weeks. In an article from CNN published yesterday, Dr. Monica Peek an internist at the University of Chicago Medical Center is quoted saying:

"What pandemics, natural disasters, economic disasters do is uncover the everyday lived experiences of these structural inequities that communities live with all the time.”

It’s important that amidst all of the current chaos and confusion, all efforts to combat the pandemic are done so through a health equity lens. As a report from the NAACP on Ten Equity Implications of the outbreak reminds us, our government (bolding is my own)“… must ensure necessary policies and practices are in place so that needed information, training, resources, and care are available equitably and reach all people in all communities.”

Images from those on the frontlines of fighting this virus are terrifying and unforgettable. Patients lining up in hallways. Medical professionals with bruises on their faces from their masks, overrun with emotion. Organized chaos. Or maybe just chaos in some places. But as many remind us, it’s important that we look toward to the future. That we have hope; hope is something that can help us get through this. Hope for an effective treatment. Hope for a vaccine.

However, as groups around the world race to find these treatments and vaccines, we can’t forget that clinical trials are another area where racial disparities are rampant.  In a review of over 200 trials supporting FDA oncology drug approvals from July 2008 to June 2018, Blacks represented only 3% of trial participants and Hispanics only 6%. The disparities are even more evident in genomic studies that seek to find associations between genetic variations and certain diseases. As of a review in 2018, 78% of people who participated in those studies were of European descent with only 10% being of Asian descent, 2% African descent, and 1% Hispanic descent.

Distrust among these populations is not unwarranted- remember! it was only in 1972 that the Tuskegee Syphilis Experiment was finally stopped after 40 years. But it’s important to push for the inclusion of diverse study populations because there are instances where medications don’t work as effectively in certain groups of the population.

Instead of sweeping the lack of diversity in research studies “under the rug”, I have seen more researchers are calling for this to end. And what’s great is that it’s not just young researchers (who are often more diverse themselves). Instead, it’s researchers who are well-known in their fields. This has been incredibly heartening as an early-stage researcher myself.

One effort underway to improve diversity in research is the All of Us research program. The goal of the program is to strive for better health for all of us. It’s a national effort to build one of the most diverse health databases in history through a historic effort to collect and study data from one million or more people living in the United States. Not only can you sign up and participate in the study, but there are also opportunities for researchers (traditional and nontraditional) to get involved. You can learn more at https://allofus.nih.gov/.

It is up to all of us - researchers, public health professionals, medical professionals, and the general public - to push towards greater inclusion. Studies that include diverse individuals - whether that be race, ethnicity, sex, socioeconomic status, or other characteristics - will ultimately be required to better understand the world around us. How can we learn what will protect all of us if studies don’t include people who look like all of us? And these studies might be more important now than ever before as we fight against this virus. We need to continue to push for inclusion in research studies. If we don’t, it’ll only serve to widen the disparities that are already present. 

Written by Kristin Moore, PhD MPH, Cancer Disparities Postdoctoral Fellow, Program in Health Disparities Research, University of Minnesota Medical School.

This blog post is for the Minnesota Public Health Association's National Public Health Week (NPHW) 2020 activities.