Although inflammatory gastric diseases, including irritable bowel disease (IBD), are known to affect minority populations, including Black people, at significantly higher rates than white people, diversity in clinical trials and other research that examines real-world The population it seeks to represent is historically poor.
Of course, this is a traditional issue in every specialty of medicine. But in gastroenterology, poor health equity has specific implications that burden far beyond drug development research.
in an interview with hcplive Lina Maria Felipez, MD, NCPS director of IBD research at Nicklaus Children’s Hospital, on increasing minority participation in clinical research during the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) 2023 annual meeting in San Diego Discussed your presentation session.
Indeed, Felipez echoed the sentiment that a lack of diversity is hindering many aspects of pediatric care.
“I don’t think it’s just GI related, right?” Felipez said. “I think it’s across all diseases, and throughout clinical research we’ve seen that there is a bias over the representation of minorities. Quite dramatic, given that minorities make up slightly less than the 50th percentile of the United States as a nation, and given that black or African Americans are represented at about 5-10%, and Hispanics as low as 1-7%. Is.”
Regarding the factors driving this disparity, Felipez highlighted a few:
Doubt
Felipez said, “I think the minority community has faced many injustices in medicine, including unethical clinical trials, that I think the population still remembers.” “It’s hard to involve them in the research process.”
education inequalities
“We know that minority populations can sometimes have lower education levels, and when we have lower education levels, we always face barriers to recruitment,” Felipez said. “It could be as simple as reading a consent form, that the language is not good enough for them – even if it’s in the same language they speak. And they sometimes want to refuse to do research just because they don’t want to go through the process of reading.”
Lack of inequality among care providers
“I think it’s a huge thing — there is a lack of diversity in health care,” Felipez said. “And it is well known that minorities feel better when they are culturally connected to someone who is of the same background as them, or even speaks the same language as them.”
time commitment
“We know time is very valuable for minorities, right?” Felipez said. “How long will it take? How long do I have to go? How many questionnaires, consent logs do I have to fill out? How many visits?”
physical entry
“Sometimes for them, it’s very hard to continue transportation efforts, and I think that’s a big hole,” Felipez said. “This may be one of the reasons we are facing is that most of the research has been done in huge academic centres, right? And when we look at the huge educational centers that are there, and when we look at where minorities are located, they are generally not located there. I think with more research that is community-based, or where they are located, I think we are going to encounter more minorities coming into research projects.
Felipez also noted that research on IBD or the effects of relevant treatments is hampered by the lack of diversity of participants due to varying genetic and cultural dispositions related to the disease. That issue can be easily understood in many chronic situations.
“It would be the same for EoE, it would be the same for all other inflammatory diseases of the gastrointestinal tract — because there just aren’t enough studies in minority populations for us to know what’s going to happen in the long term,” Felipez said. “
Additionally, specific factors such as culturally-centered diet and lifestyle behaviors may greatly influence gastric diseases in patients. Different groups generally eat food separately from each other.
“We know that diet is a factor that is going to change or influence your microbiome or your gut flora,” Felipez said. “And what I’ve seen in our population — which is mostly Hispanics of Caribbean origin and Native America, and not as much of Mexican origin as other densely populated Hispanics — is that diet is very important to them. And from what I could see, diet can be one of the predisposing factors to all these inflammatory conditions.