*all patient names have been changed to protect patient privacy
Juan could not meet me at the hospital for our scheduled study visit because his brother needed to use the MetroCard his family shares to get to work. I have been living in New York City for over seven years and I had never heard of a person sharing a MetroCard, let alone with an entire family. Juan had collected a stool sample for one of the research studies I manage, which our lab uses to characterize the types and composition of bacteria living in his gastrointestinal tract. To lessen Juan’s burden of finding transportation and to preserve the integrity of the sample, I took the subway to meet him at his home. At the time, Juan was just 19 years old, attending community college and living at home with his mother in a predominately Hispanic rent-controlled apartment complex in Bushwick, a Brooklyn neighborhood that is now a quintessential case study of New York City gentrification. His lack of access to guaranteed transportation is not Juan’s only obstacle to healthcare – like many of the patients I work with, Juan is under-insured, making the costly biologic therapies required to maintain his remission seemingly out of reach.
Stories like Juan’s are unfortunately common within a subset of the patient population that I work with. I recruit patients diagnosed with inflammatory bowel disease (IBD) from hospitals associated with New York University’s School of Medicine to participate in longitudinal research studies evaluating the role of the human microbiome in IBD pathogenesis and treatment efficacy. While all the patients that I work with are cared for by the same team of NYU attending gastroenterologists, half are treated at Bellevue Hospital and the other half are treated at Tisch Hospital. The only difference between these two medical centers is that Bellevue provides access to care for under- and un-insured New York City residents. Therefore, much of the patients that I see at Bellevue are immigrants, some undocumented, with nationalities spanning from the Dominican Republic to China. This unique patient population adds a depth of diversity to IBD research that is typically uncommon in the literature.
While the physical presentation of IBD is similar across all ethnic groups and socioeconomic classes, the treatment experience for underserved minorities leaves much to be desired. I have been recruiting patients at Bellevue Hospital to enroll in an IBD registry to study the differences in clinical presentation and care across different races of IBD patients. Even though we found that disease severity and clinical strategy did not differ based on racial group membership, the number of years it took from symptom onset to diagnosis was larger in the African American patient population. This is highly problematic given that IBD is a progressive disease, with prognosis worsening with each year the disease goes untreated. This disparity is purely reflective of access to care, highlighting the increased vulnerability of ethnic minorities when it comes to managing their IBD.
Bellevue Hospital provides a crucial resource to these vulnerable patients, making their IBD therapies accessible and affordable while providing care in a safe and culturally accommodating space. For example, while approximately 30% of the patients that I recruit do not speak English, I can still work with them through Bellevue’s extensive translator services. However, patients who do not speak English are at a serious disadvantage in terms of health literacy as it pertains to their IBD diagnosis and treatments. And while Bellevue provides a unique service to these patients, the difference in clinical care experience between Bellevue and Tisch Hospital is striking. José, a patient enrolled in our study evaluating the impact of gut bacteria on thiopurine intolerance, has learned to take an unpaid day off from work when he has a clinic appointment because he has waited up to five hours for bloodwork in the past. The possibility of missing work or being left without childcare results in Bellevue patients missing their clinic and infusion appointments at a much higher rate than privately insured patients seen at Tisch. This leads to treatment nonadherence, resulting in a greater risk for disease relapse and hospitalization.
While our studies are strictly observational, I have found that by participating in research, our Bellevue patients clinically benefit. Providing direct clinical care to patients was something that I had always thought I needed professionally to feel like my work was positively impacting people’s lives. However, I have discovered the power of research to provide an extra layer of clinical and psychological support to patients who are especially vulnerable in terms of healthcare access. For example, because our study timepoints occur at clinically relevant intervals (at each infusion or clinical checkup) I am able to remind patients of their upcoming appointments and proactively identify and troubleshoot potential barriers to care before they occur. I also serve as an additional liaison between the provider and patient, recognizing when patients are clinically worsening and communicating this to their treating physician.
Not only do underserved patients clinically benefit from participating in research studies, so do the quality and applicability of the research findings. While IBD has traditionally been viewed as a predominately Caucasian and Western disease, incidence of the disease has been increasing worldwide, with more and more ethnic groups being affected. Bellevue Hospital’s culturally diverse set of IBD patients from around the world provides a unique opportunity to study a representative sample of this global phenomenon. It is important to me that I am able to continue studying patients from diverse cultural and ethnic backgrounds in order to capture the complete picture of disease in my research.
I am proud to report that Juan is now 21 years old, about to earn his associates degree, and is maintaining his remission through effective disease management. Even after his participation in our research study ended, Juan would miss his infusion appointments unless I reminded him, often joking that I was his clinic mom. However, he recently asked for me to discontinue my reminders about his appointments because he wanted to be more proactive in his IBD care. I like to think that through his participation in research, I provided Juan with disease management scaffolding. My PI, Dr. Lea Ann Chen, is a physician scientist who solely treats Bellevue IBD patients like Juan. She was recently awarded the Sherman Emerging Leader Prize for her work treating and studying this underserved population. I am grateful to have had played a role in this work. I aim to follow in her footsteps, focusing my research on underserved chronic disease patients in order to not only provide an additional layer of clinical care, but to also ensure that my research findings extend to all members of a disease patient population.