Critical Need for Disability Data Collection Revealed in Landmark Healthcare Study

Based on reporting by Hoag Levins

Despite representing 67 million Americans, people with disabilities were not recognized by the National Institute on Minority Health and Health Disparities (NIMHD) as an official disparities population until 13 months ago. This significant gap has long complicated researchers' efforts to secure National Institutes of Health (NIH) funding for studying health disparities affecting this population.

Dr. Tara Lagu, Professor and Director of Northwestern University's Institute for Public Health and Medicine's Center for Health Services and Outcomes Research, has emerged as a leading voice on this issue. "People with disabilities are the most extreme example of some of the failures of the health care system," Lagu told audiences at the University of Pennsylvania Leonard Davis Institute of Health Economics (LDI) annual Samuel P. Martin, III, MD Memorial Lecture. "When you think about it in a big picture way, it's like watching the perverse incentives that drive our healthcare care system play out in some of the worst ways possible."

Widespread Access Issues

Lagu's groundbreaking research has revealed troubling patterns. A 2013 study published in the Annals of Internal Medicine found that 22% of surveyed physician practices would not schedule appointments for wheelchair patients, with gynecologists showing the highest refusal rate at 44%. Some practices reported unsafe transfer methods, including using parking lot attendants to lift patients.

Her 2022 HealthAffairs study, which granted physicians anonymity for frank discussions, revealed several concerning findings:

• Physical barriers including inaccessible buildings and equipment

• Lack of communication accommodations for vision or hearing disabilities

• Insufficient knowledge and training among healthcare staff

• Structural barriers affecting clinic operations

• Some physicians displayed negative attitudes about disabled patients

The Data Problem

"Neither disabilities nor accommodation needs are documented in the electronic health record," Lagu explained. "In comparison, think about the allergy examination example—we document allergies aggressively because we're scared about that. We don't do that with disability accommodation needs and, as a result, we don't know what our patient needs are."

Necessary Changes

According to Lagu, healthcare facilities need to implement comprehensive changes:

• Height-adjustable exam tables with adequate space for transfers

• Accessible routes in and out of buildings

• Accessible bathrooms

• Sign language interpreters and telecommunication devices

• Programmatic systems to prepare for patients' accommodation needs

"We need to educate our health care workforce how to provide access and care for people with a wide range of disabilities," Lagu emphasized. She added that policy changes are crucial: "If we're not required to collect the data, not every hospital system is going to do it, and I think we have to have a standardized way to collect the data so that we can then do the studies that actually identify where the gaps in care are. There's an entire field of research waiting to be done if we would just collect the data."

Based on Dr. Tara Lagu's presentation at the annual LDI Samuel P. Martin III Memorial Lecture, University of Pennsylvania Leonard Davis Institute of Health Economics, as reported by Hoag Levins.

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