Though inflammatory gastric diseases including irritable bowel disease (IBD) are known to affect minority populations including Black people at a significantly greater rate than White people, diversity in clinical trials and other research that seeks to represent the real-world population is historically poor.
Of course, this is a conventional issue across every specialty in medicine. But in gastroenterology, there are specific effects of poor health equity that burdens more than just drug development research.
In an interview with HCPLive during the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) 2023 Annual Meeting in San Diego, Lina Maria Felipez, MD, NCPS director of IBD research at Nicklaus Children’s Hospital, discussed her presentation session on increasing minority participation in clinical research.
Indeed, Felipez echoed the sentiment that a lack of diversity is hindering many facets of pediatric care.
“I don’t think it’s only GI related, right?” Felipez said. “I think it’s throughout the diseases, and throughout the clinical research we have seen that there’s a bias on the representation of minorities. Seeing that minorities compromise a little bit less than the 50th percentile of the nation of the United States, and seeing that the representation of like Black or African Americans is like around 5-10%, and Hispanic is as low as 1-7%, is quite dramatic.”
Regarding the factors driving this disparity, Felipez highlighted a few:
Mistrust
“I think that the minority community has faced multiple injustices in medicine, including non-ethical clinical trials that I still think the population remembers,” Felipez said. “It’s hard to get them involved in the research process.”
Education Disparities
“We know that minority population can sometimes have a lower level of education, and when we have lower levels of education, we always encounter barriers in recruitment,” Felipez said. “It can be as simple as reading a consent form, that the language is not adequate for them—even if it’s in the same language that they speak. And they sometimes want to decline doing the research just because they don’t want to go through the reading process.”
Lack of Disparity Among Care Providers
“I think it’s a big one—there’s a lack of diversity in healthcare,” Felipez said. “And it is well known that minorities feel better when they’re culturally connected to somebody that is the same background as them, or even speak their same language.”
Time Commitment
“We know for minorities, time is quite of a value, right?” Felipez said. “How long is it going to take? For how long do I have to go? How many questionnaires, consent logs do I have to fill? How many visits?”
Physical Access
“Sometimes for them, it’s very hard to get the transportation efforts going, and I think it is a big hole,” Felipez said. “It could be one of the drivers that we’re facing is that most of the research has been done in huge academic centers, right? And when we look at the huge academic centers out there, and when we look where the minorities are located, they’re usually not located there. I think with more research done community-based, or where they are located, I think we’re going to encounter more of the minorities coming into the research projects.”
Felipez also explained that research into the effects of IBD or relevant treatments are being hampered by the lack of participant diversity due to differing genetic as well as cultural disposition related to the disease. That issue can easily be extrapolated across a number of chronic conditions.
“It will be the same for EoE, the same for all the other inflammatory diseases of the gastrointestinal tract—because there’s not enough studies in the minority population for us to know what is going to happen in the long run,” Felipez said.
Additionally, specific factors like culturally-centric diets and lifestyle behavior may greatly influence gastric diseases in patients. Different groups generally eat differently from one another.
“We know diet is the one factor that is going to change or affect your microbiome or your gut flora,” Felipez said. “And from what I have seen in my population—which is mostly Hispanic from the Caribbean descent and Native America, and not as much as Mexican descent as other Hispanic densely-populated areas are—is that diet is very important for them. And from what I could see, the diet could be one of the predisposing factors for all of this inflammatory conditions.”
