Revealing health disparities for people with disabilities: A Q&A with Ilhom Akobirshoev, PhD’15

July 06, 2020

By Karen Shih

Ilhom Akobirshoev, PhD'15, Director of Research, Lurie Institute for Disability Policy
Ilhom Akobirshoev, PhD’15, research scientist at the Lurie Institute for Disability Policy, is dedicated to revealing the health disparities faced by the most vulnerable people in the world. His early research in his native Tajikistan focused on maternal and child health, and he continued that work when he came to Heller in 2010 to earn his doctorate, studying the impact of parental health insurance on health outcomes for children. He added a focus on disability when he joined Lurie in 2013. In spring 2020, Akobirshoev received Heller’s Early Career Investigator Award, honoring his work on pregnancy and birth outcomes for women with disabilities, and his collaborations with Heller researchers in global and behavioral health.

Congratulations on winning the Heller Early Career Investigator Award! How did you become interested in disability policy?

The most vulnerable populations are close to my heart. They are the ones who need interventions and the attention of policymakers. Disability was a natural fit. Now my interest is the intersectionality of disability and maternal and child health, disability and race and ethnicity, and other disparities. I love working at Lurie, and I’m very passionate about my work.

The great thing about the Heller School is that we always connect our findings to policies—it’s what we do. It’s not just about finding disparities, but what’s next and how our findings can be used to inform policies and decisions.

Tell me a bit about your current work on maternal health.  

Right now, I’m working on a National Institutes of Health (NIH) funded project, looking at birth and pregnancy experiences and outcomes for women who are deaf and hard of hearing (DHH). We used national hospital discharge records with a multitude of information about pregnancy and delivery and I crunch the data and see how their experiences were different from the general population. We control for many factors, such as age, race, income, and hospital characteristics, so that the only difference that remains is being deaf and hard of hearing.

Women with disabilities have the same rights and aspirations to have children. From a social justice perspective, you expect women with any disability to have equal access to health care services and the same attention from health care providers, to make sure they have a happy and healthy pregnancy and childbirth experience. That’s why before this, I also worked on a NIH-funded project on pregnancy and childbirth that examined the experiences of women with intellectual and developmental disabilities.

In an ideal world, adverse indicators such as low birth weight and preterm birth would be spread across different types of populations equally. But DHH women are at a much higher risk for those outcomes. We delved deeper to discover why, through qualitative interviews with patients, as well as OB-GYNs and other health care providers. We found that there were communication issues. For example, health insurance doesn’t pay for interpreters, and DHH patients have lower literacy rates, so providers need to make additional efforts to make sure those patients understand and adhere to medical instructions. However, the challenge is that health care providers say medical schools don’t train them properly to treat patients with disabilities.

We’ve published four papers so far, including in “Obstetrics & Gynecology” (commonly known as “The Green Journal”), the leading journal in the field. And we’ve also helped develop a set of guidelines for providers, especially OB-GYNs, to inform them about the adverse pregnancy risks that the deaf and hard of hearing population is facing and how providers can work to prevent those. We’re partnering with the American College of Obstetrics to distribute these guidelines to all of their members, and we’re also trying to educate medical schools about the importance of training students with increased exposure to patients with disabilities.

What are some other studies you’re leading right now?

I’m working on a grant-funded project looking at the health care experiences of children in Boston, focusing on the intersection of racial and ethnic disparities and special health care needs. We know there are health care disparities based on race and ethnicity, and disparities because of disability. If a child has both, a disability and is part of a minority population, we try to learn: how do the two risks add to each other?

We found that having a disability and being from a minority group has a compounding effect on the adverse health care outcomes for children in Boston, compared to the reference group of white children with no disabilities. The compounding effect of having a disability and belonging to minority community in Boston is more pronounced than it is nationally—they are twice as likely to face health care disparities. Boston is the mecca of the best hospitals in the nation, but these children are not benefitting from these stellar healthcare institutions. These are the children who are most in need, so if there are any programs created to reduce health care disparities, these kids should be the first target.

We partnered with the Boston Public Health Commission on this work, and three of their staff members are co-authors on the paper that is being published. There’s a lot of back and forth communication—they want to understand 100% of what we’re doing, and they’ll challenge us to look deeper at the data. We’ve also done a presentation for them and presented our findings at two conferences, and they’re disseminating our study through their website.

Heller researchers often work across institutes. What are some of your collaborations here at Heller?

This is very close to my heart—we want to break the silos and combine our comparative advantages. My personal small dream is to bring an international perspective to the Lurie Institute, because we primarily work on U.S.-based policies right now.

We’re partnering with Professor A.K. Nandakumar, director of the Institute for Global Health and Development at Heller and chief economist at the Office of the Global AIDS Coordinator, looking at how HIV and disability relates to intimate partner violence in sub-Saharan Africa. We already know that women with HIV are at higher risk for intimate partner violence, and women with disabilities are also at a higher risk. In our joint study we are examining whether having HIV and disability have compounding effect on risk for intimate partner violence by calculating their independent and combined risks. We’ve found that the compounding effect was not just additive, but it’s multiplicative. The observed risk of having both HIV and a disability was more than sum of the risk from having a disability and HIV alone. Our work with Professor Nanda’s team is ongoing with several other research questions—it’s been a great collaboration.

In addition, I’m also part of the INROADS project (Intersecting Research on Opioid Misuse, Addiction, and Disability Services), with the Institute for Behavioral Health (IBH). The opioid epidemic is widespread in the United States and a public health emergency. But the statistics you see rarely include the disability community. We are working with our colleagues at IBH to look at emergency department (ED) visits for opioid use disorder (OUD) among deaf and hard of hearing adults. Previous research tells us that the deaf community is at high risk of using opioids, and the deaf community is at high risk of using the ED, but nobody looks at the two together. With our study we are trying to fill this gap by comparing OUD ED visits between adults in the general population and adults who are deaf and hard of hearing (DHH). We found that DHH adults are twice as likely to be admitted in the emergency department for OUD. Within this study, we’re also looking at ED visits for prescribed opioid overdoses to see if they can be prevented, because these could be the result of a communication challenge between the provider and the patient. Our analysis shows that DHH adults, even after accounting for socio-demographic, hospital, and clinical characteristics, were at higher risk for ED visits involving prescribed opioid overdose. We hope that findings such as these will continue informing policy and decisions to reduce disparities based on disability type.