A Research Agenda for Documenting Disability Status within Healthcare Organizations to Address Disparities in Care

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Individuals with disabilities are at a greater risk of experiencing healthcare disparities. To address these disparities, healthcare organizations (HCOs) need to consistently and accurately document patients’ disability status. Unfortunately, the evidence base does not yet exist to guide HCOs in determining what data to collect or the best method to collect the data. The authors propose a research agenda for developing and administering disability status questions. To determine what data to collect, researchers need to addresses the following challenges: disability is a complex concept, a wide range of types of disabilities exists, severity levels of disability can differ and, finally, patients might use assistive devices or aids to mitigate or ameliorate their disability. Additionally, research is needed to determine the frequency with which to administer questions due to the dynamic nature of disability, and to develop protocols for assessing the most appropriate person to answer disability status questions. Targeted research will lead to disability status questions that accurately and consistently identify individuals with disabilities and produce actionable data that HCOs can use to detect and address potential disparities in care.

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