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Why Poor Diversity in Medical Research Threatens Health Equity

Community partnership and cultural competence will be essential for driving clinical trial diversity and health equity.

When it comes to public health or medical research, there shouldn’t be any study about minority communities that doesn’t include minority communities. In failing to engage with stakeholders from racial, gender, or other underrepresented groups, researchers run the risk of perpetuating health equity barriers that result in health disparities.

But in research, that overlooking of underrepresented groups is all too common.

“Without research, we really are left with just a bunch of questions,” said Sheldon Fields, PhD, RN, CRNP, FNP-BC, AACRN, FAANP, FNAP, FAAN, 1st vice president at the National Black Nurses Association.

“The problem becomes, research has not always historically included the most diverse populations,” Fields, who is also the associate dean for Equity and Inclusion at the Pennsylvania State University College of Nursing, told PatientEngagementHIT. “Or to state it another way, research has oftentimes left out a large number of people and focused a lot on the dominant White population living in the United States.”

According to a 2019 study published in JAMA Oncology, the typical cancer clinical trial was about 76 percent White, while Asian patients usually represented about 18 percent of the trial population, Hispanic patients 6 percent, and Black patients 3 percent.

This comes even as Black and Hispanic patients comprise 22 percent and 44 percent of the cancer incidence in the US, the study authors said.

And it’s not just cancer clinical trials that are falling short. A perspective piece in the New England Journal of Medicine described racial disparities in COVID-19 research, and in 2019, Clinical Psychology Review published a study describing diversity issues in clinical trials for depression.

These kinds of diversity issues can be really dangerous, considering the impact that clinical research can have on the medical field. According to Fields, not including certain populations in the clinical trial process can overlook an entire understanding of disease.

For example, some of the oldest research about heart disease only looked at men, something that ultimately disadvantaged women experiencing heart disease because the illness manifested differently in them. Including women in the first studies about heart disease would have circumvented that issue.

That perspective in NEJM, too, outlined a problem. Without enough information about how COVID-19 impacts communities of color, medical professionals cannot completely understand the disease that is so ravaging Black and Hispanic people.

But as they stand now, a history of distrust and poor community health engagement will hamper any efforts to diversify medical research. According to Fields, medical researchers cannot simply add more Black or Hispanic patients to their studies; they need to truly collaborate with these communities and include them in the study design in order to foster collaboration.

Currently, that level of understanding and community engagement isn’t there, Fields stated.

“There is a long-term dearth of cultural competence among the researchers who do not have the background or the appreciation of working with very diverse populations,” he said. “So researchers have not really been exposed. They bring their own bias, whether conscious or unconscious, and they do not understand how they put people in boxes or all the ways that they put up value to including the most diverse populations that they possibly can.”

“Part of the other problem is the depth to which researchers understand the historical trauma that has been inflicted upon a lot of Black and Brown communities that really have been harmed by research done in the past,” he added.

Take, for example, the Tuskegee syphilis experiment. That study, which conducted medical experimentation on Black bodies, resulted in disastrous public health effects and the death and illness of Black participants and their families. That is not easily forgotten, Fields said.

“There have been undisputed historical atrocities,” he noted. “There is a level of mistrust that does exist.”

Medical researchers without an understanding of that mistrust and the history behind it will likely not get very far in recruiting diverse patient populations for their studies, Fields said.

“It is probably not going to be very well accepted, especially if you have not done your due diligence and did an honest partnership with a community that you are trying to include in your research,” he explained.

“Basically, there should be no research done on us that does not include us,” Fields emphasized. “What that essentially means is if you are going to design any type of research study or clinical research outreach, clinical trial, whatever it is, it really should be planned in partnership with the community that you are trying to include.”

This issue comes from the top, Fields suggested. In addition to a study participant diversity issue, the medical research industry faces a researcher diversity issue. Most of the medical researchers getting funding out of the NIH are White, Fields noted, which doesn’t help much to diversify the participant pool.

“So NIH, even in its voter analysis, has admitted that there is a dearth of funding that has been done for principal investigators that are people of color,” Fields said. “The research that is still being funded is mainly White researchers. They are mostly the ones mainly being funded. Then, that sort of gets trickled down into the project—how what gets published and when it gets published, the dissemination of it, how it gets presented back.”

In 2020, the NIH offered up some data about the race of researchers receiving certain types of grants in 2018. The data showed a 10 percent funding gap between Black and White researchers when controlling for factors like proportion of grant applications. When controlling for relevant factors, Black researchers received 2 percent of RO1 grants.

As NIH continues its work to fund more Black researchers, Fields said it should also create requirements for more diversity within a trial participant pool.

“If you really want to change it from the very top from the funding agencies, they need to start putting in the RFP requirements that your participants in your research must reflect the diversity of the population living in the United States,” he recommended. “You make it a criterion in order for you to get your funding. So you say to those researchers, you must now include women, you must have diversity of races and ethnicities.”

Fields said the NIH All of Us campaign has been a great proving ground for this, demonstrating the best way to create a field of diverse patient data used for medical research.

“The participants are coming from all backgrounds, one million of them that will truly reflect the whole diversity of our country and the research is going to use that database and really learn how biology, our lifestyle, the environment really affects our health,” he concluded. “It is going to provide a public resource because all types of researchers will have access to this database, particularly they are working within the requirements. The participants must reflect this type of diversity in a true partnership.”

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