Dr Barnes discusses his recent research on the racial and ethnic distribution of IBD in the United States. He made a presentation on this topic at Digestive Disease Week on Friday, May 21.

Edward Barnes, MD, is an assistant professor in the department of gastroenterology and hepatology at the University of North Carolina at Chapel Hill.

Dr Edward Barnes:   Hi. I'm Ed Barnes and from the University of North Carolina at Chapel Hill. Here at DDW, I presented our work describing the racial and ethnic distribution of inflammatory bowel disease in the United States. For this particular project, we had a unique opportunity to evaluate over 39 million participants from the PCORnet.

PCORnet is the National Patients Center Network of over 54 health systems, over 100 different health centers, about 370 different hospitals and emergency departments, where we could evaluate a wide variety of different patient populations to do this type of work. This was really a unique opportunity.

If we think about the racial and ethnic distribution of IBD in the United States, we really, to this point in time, have not had an outstanding understanding of what the racial and ethnic distribution is in patients with Crohn's disease and ulcerative colitis.

This is in large part because, in the larger epidemiology evaluations of patients with inflammatory bowel disease, these have been performed mostly in either large centers or large systems that are predominantly of patients of white race. We don't have a great understanding of what the distribution of Crohn's disease and ulcerative colitis is in patients of non-White race or Hispanic ethnicity in particular.

This was a unique opportunity to evaluate patients within PCORnet — 39 million patients — in a larger distribution. To evaluate how this would be generalized to the greater population in the United States, we did compare the PCORnet population to that of the 2015 US Census data.

The reason that we did this is because our evaluation of PCORnet between 2013 and 2018, 2015 US Census data was right in the middle. In this evaluation, our PCORnet population roughly generalized to that of the larger US Census data from that point in time, with the exception that African American patients were slightly more represented in the PCORnet population.

In our evaluation, the major finding was that overall, patients of white race were overall more represented in patients with Crohn's disease and ulcerative colitis, when compared to the overall PCORnet population, or what would be expected if we looked back at that 2015 US Census data.

This is in contrast to patients of Black or African American race, or patients in the evaluation of Hispanic or non-Hispanic ethnicity. Our patients of non-Hispanic ethnicity were more widely represented in the Crohn's disease and ulcerative colitis population, as compared to the overall PCORnet population for the US Census data.

If you put these findings into context, we think this is a really interesting evaluation. First of all, as I mentioned, PCORnet is a really large evaluation of patients, 39 million patients overall. This is roughly 10% of the US population, that we were able to evaluate using this unique data source.

Why this is important, as I mentioned before, is that this hasn't really been done on a large scale to understand what the distribution of Crohn's disease and ulcerative colitis is among non-white races, and particularly among patients of Hispanic ethnicity.

By demonstrating these new foundations of what this distribution is in patients of non-white race and Hispanic ethnicity, we can really set some foundations and some targets for our future studies of health equity and disparities research, as well as potential some targets for clinical trials we could be going for in the future.

By having at least an estimate of how many patients with Crohn's disease and ulcerative colitis are of minority races and ethnicities, I think it can really inform our future areas of research.

For example, if we're doing studies of health care resource utilization to really understand where disparities in IBD care exists, be that either hospitalizations, or surgeries, or readmissions, or emergency department utilization, we really need to have a foundation of how many patients with a particular race or ethnicity group have inflammatory bowel disease.

This study is an important first step to really set those denominators, to really understand that.

Similarly, if we're going to look at clinical trial recruitment and future development of drugs for the treatment of Crohn's disease and ulcerative colitis, perhaps these can be a framework or benchmark for how many patients of minority race or ethnic groups could be recruited to clinical trials in hopes of improving generalizability of our clinical trial data, to then inform our future clinical practice, as these drugs move from the clinical trial development programs into clinical practice.

Our study does have important limitations that we should acknowledge. This is an important population-level evaluation, but there are potential reasons that patients with Crohn's disease and ulcerative colitis of minority races or ethnicities might not be represented here. In order to be counted in the PCORnet population, you had to have access to one of those hospital systems or those centers that I mentioned before.

You had to be counted in electronic health record. We know that there are issues with access to care among patients of minority races and ethnicities. This is one of the disparities that we've been keenly interested in trying to untangle and trying to improve health equity, as I mentioned before. Where there's access to care issues, patients might not have been counted in the Crohn's disease and ulcerative colitis population. This is one potential limitation.

This study does, hopefully, set at least a framework for how we can better study disparities and better to study the overall epidemiology and natural history of inflammatory bowel disease among patients of all races and ethnicities in the United States, and hopefully, will spur a much larger research among patients of non-white races and ethnicities in the United States.