IAP Health: Alana Chandler (’22)
Given that I’ve spent most of my prior IAPs doing indoor track practice, I had never explored the plethora of opportunities available at MIT for the January term. I’ve done my share of IAP classes and UROPs, yet it was only this year that I discovered the wonderful opportunities offered at the PKG Center, from their social impact internships to the IAP Health program with Boston Medical Center (BMC). I participated in the BMC program as a research intern, and it was a true blessing that I came upon this opportunity. Having taken a handful of Women and Gender Studies classes that covered topics at the intersection of equity and healthcare, I became interested in learning about what a career at this crossroad could look like. Working at BMC was exactly that.
BMC is the largest safety-net hospital in New England, aiming to deliver “exceptional care without exception,” which means lowering barriers to healthcare accessibility. More than half of BMC’s patients are from underserved populations, and more than 32% do not speak English as a primary language. To this end, the BMC offers interpreter services in over 250 languages, as well as a food pantry and a plethora of other programs.
As a research intern at BMC, I worked on a team with Research Coordinator Belinda O’Hagan and fellow MIT student Kerri Lu. The goal of the research team is to assess the state of care for autistic patients at BMC and how that care can be improved to ensure these patients are getting the treatment they need in the most accessible and comfortable manner. Over the course of January, our team worked on a small handful of projects. While we were originally supposed to analyze data from a focus group study speaking with autistic individuals to gain a deeper understanding of what makes healthcare “Autism Friendly”, there were logistical delays in the Institutional Review Board (IRB) approval of the project. Fortunately, I’ve been given the opportunity to extend my stay in the internship into the spring semester so I can help with this project. Instead, I spent my January working on the Extensions for Community Health Outcomes (ECHO) focus group guide and Autism Handbook.
ECHO is a program that aims to train primary care providers to look out for signs of autism and make appropriate referrals for further evaluation and connect families to local resources. We worked on a focus group guide to be conducted with providers after completion of the program. Specifically, we developed new questions for the guide by analyzing survey results that the providers filled out intermittently: before, during and after the ECHO training.
The goal of the Autism Handbook project is to create a tool that equips health professionals in other institutions to develop Autism Friendly strategies themselves. First, I conducted a literature review on the background of Autism Spectrum Disorder (ASD), healthcare barriers for ASD patients, and ASD interventions. As someone not familiar with ASD before the program, I learned that the hospital environment can be incredibly stress-inducing for some autistic patients due to sensory overload. This can be induced by the cold feeling of a stethoscope on skin, crinkly paper on the examination table, and a crowded waiting room. As for ASD interventions, while Applied Behavioral Analysis (ABA) is considered the best “treatment” for ASD by many hospitals, I learned that some autism advocates consider it a potentially harmful intervention that forces autistic people to mask their autism rather than focusing on learning skills. As a supplement or alternative to ABA, I read about interventions like occupational therapy and vocational training.
While diving into the literature on ASD was an eye-opening learning experience, I was truly blown away by the supplemental programming offered by the PKG and BMC. Each week, the PKG interns got together on Wednesday nights for a virtual dinner together. During one of these dinners, the PKG gave us an introduction to prominent activists in the disability justice community. It was here that I heard this slogan for the first time: “Nothing about us without us.” This sentiment emphasizes the importance of ensuring that people with disabilities are at the healthcare table. Here, I was also introduced to the Instagram account @the.autisticats, a page run by autistic young adults to share their experiences as neurodivergent people, which I highly recommend checking out!
Another amazing facet of the supplemental programming was the weekly health equity rounds hosted by BMC. These talks were not directly related to autism advocacy, but discussed topics on social justice and medicine. One of the talks was on pharmacoequity — something I’d never heard about before this talk. The speaker began by describing a recent case where a child was brought into the emergency department (ED) after contracting malaria following return from foreign travel. Malaria is a medical emergency like sepsis and should be treated immediately. However, there was no malaria medication in the ED, which delayed the patient’s treatment and led to the severe progression of their malaria. The population at greatest risk for malaria is individuals visiting friends and relatives (VFRs) in malaria-endemic countries/regions. VFRs are typically first or second generation immigrants, who are more often BIPOC individuals and more likely to experience poverty, sharing many characteristics with BMC’s patient population. More than half of all children seen at BMC have at least one parent born outside the United States. While the availability of drugs has much to do with the drug trial process and distribution based on each pharmaceutical company, the presenters wanted to point out the pattern of lack of availability of medications that can affect populations that are often already disadvantaged.
Another health equity talk that intrigued me was by Dr. Tejumola Adegoke on obstetric racism, which she defined as the “mechanisms and practices of subordination to which Black women and people’s reproduction are subjected that track along histories of anti-Black racism.” Dr. Adegoke said that the disparities in birthing outcomes (i.e., low birth weight, postpartum depression, preterm birth) cannot simply be attributed to socio-economic class, education (as in attached graph), or BMI. She shared that racism explains maternal morbidity where the aforementioned factors do not. Racism in obstetrics can manifest in diagnostic ignoring (e.g. a famous example is when Serena Williams exhibited symptoms of pulmonary embolism following her birthing but was ignored), coercion, presenting institutional policies as the only options, neglect/dismissiveness, intentional pain and more.
It amazed me to see that every week, providers who had been in the field for decades, who had been through the long medical school curriculum, were engaged in these weekly talks. My short summary of these talks is surely not doing them justice given the in-depth data and detail that the speakers provided, but hopefully this gives you a taste of the commitment the BMC staff has to always learning and growing.
This program helped me see how people center justice into their medical practice. Through my academic career, the way science has been taught is that we focus on theories and equations, yet such learning is often divorced from the people the science can impacs. The applications of what we learn in class can have amazing or harmful impacts on society, for which the ethical lens is often not discussed in the classroom. Working at BMC is a terrific example of how you can use these scientific and analytical tools for social justice, even though historically these institutions have been built on harmful practices. It’s not possible to undo the harms of the past, but this internship at BMC helps you develop tools to listen, learn from, and support communities that have been marginalized by the medical institutions.