A conversation about disability and health with Lisa Iezzoni​

Last fall, Lisa Iezzoni, a professor of medicine at Harvard Medical School, published a study offering a candid and damning look at how doctors feel about treating the 61 million people in the U.S. who have a disability. The research was covered by Tradeoffs, The New York Times and a host of other outlets.

Her study, based on a small focus group, scratched the surface of a larger issue. Data from other surveys reveal how widespread inadequate care for people with disabilities is: 

• Only 41% of doctors feel strongly confident they can provide equal quality care to patients with disabilities compared to patients without reported disabilities. 
• Only 40% of doctors use accessible exam tables or chairs, often preventing full physical exams or screenings such as pap smears from being completed. 
• Adults with disabilities were 44% more likely to report delays in receiving medical care during the COVID-19 pandemic. 

People with disabilities are four times more likely to report being in poor or fair health. Yet our health care system appears woefully unprepared to meet those health needs. 

Lisa Iezzoni, MD, MSc, Photo Credit: Jeffrey Andree, Mass General

So I spoke with Lisa Iezzoni about what both policymakers and researchers can do to make more progress on this issue. The interview has been edited for length and clarity. 

Shah: You’ve done a lot to shed light on the disparities in care that patients with disabilities face. But what are some remaining questions that researchers like yourself still need to answer?

Iezzoni: The main one is: how do we fix this? 

We need to figure out why ableist attitudes persist among physicians. And how do we make things [like exam rooms and medical equipment] more accessible? 

Another is around aging. People who previously would have died of their disabilities at young ages are now living into middle age or even older age. They are going to have comorbid conditions [like cancer or dementia]. How do you maximize functioning for [these] people?

Shah: As you well know, asking research questions is one thing – having the data you need to answer them is another. What gaps do we have in our data in the U.S. around this patient population?

Iezzoni: If you go to the Office of Minority Health website, you can find six [widely used] standard questions about disability. But they don’t capture all forms of disability. For example, it might be hard to identify somebody with autism using those six questions. 

Part of it is a real estate issue. With most demographic data – such as age, race or gender – typically you select one box. With disability, you have to ask multiple questions. There hasn’t been enough allotted space in public health surveys to ask sufficient questions about disability. 

Shah: When you think about all the data that we do have, what are some important, evidence-based changes that policymakers could make today to improve health care for people with disabilities? 

Iezzoni: The easiest one is for the Department of Justice to enforce the U.S. Access Board Standards for medical equipment, which require practices to have accessible medical and diagnostic equipment. 

Then we need to figure out how to expand access to sign language interpreters across health care settings, likely through payment reform. And finally, we need to improve continuing medical education for providers. 

This all needs to be part of the diversity, equity and inclusion work that states are doing. Anything with D-E-I needs to add an “A”, for accessibility, so people don’t forget about it.