Getting it Right: Developing Disability Status Questions to Address Equity in Care

Background: Recent policies, including Section 4302 of the Affordable Care Act, recommend healthcare organizations consistently document patients’ disability status in order to provide accommodations in the clinical encounter and identify potential disparities in care. Our objective was to explore patients’ and providers’ perspectives on what information healthcare organizations should collect and compare this to disability status questions recommended by the Department of Health and Human Services (HHS).

Methods: We conducted 8 focus groups with people with disabilities and caregivers who represented a broad spectrum of disabilities. Additionally, we interviewed physicians from a variety of specialties. Two members of the research team conducted an inductive, thematic analysis on the participants’ narratives.

Results: Both patients and physicians characterized the HHS disability status questions as comprehensive and appropriate. However, they noted the omission of questions that addressed autism, communication disabilities and learning disabilities. Both people with disabilities and physicians wanted the questions to include inquiries about assistive devices or assistance with an activity. Patients and physicians thought it critical that the questions provide specific information that could be used in the health care encounter and, therefore, found questions about dressing, bathing and running errands irrelevant.

Conclusions: The participants recommended slight modifications of the existing HHS questions. Further refinement and validation is needed to ensure that modified questions accurately and comprehensively identify patients with disabilities in the health care setting. Through patient-centered questions that provide actionable information, healthcare organizations can provide more equitable, patient-centered care to patients with disabilities.