Advancing Standardization and Interoperability of Disability-Related Data in Electronic Health Records: A Qualitative Study (Preprint)

<sec> <title>BACKGROUND</title> Approximately 27% of United States adults live with a disability, yet they face persistent disparities in health outcomes and access to care. The systematic collection of disability status and accommodation needs data in electronic health records (EHRs) can support more equitable access to care, help ensure that patients with disabilities receive appropriate, person-centered care, and bolster efforts to monitor and address health disparities for people with disabilities. However, data collection remains limited in the health care setting. </sec> <sec> <title>OBJECTIVE</title> This qualitative study aimed to examine current practices for collecting, documenting, and exchanging disability-related data in EHRs. This study identifies the current state of disability-related data collection by health care organizations; describes how these data are used by health care organizations and researchers; presents challenges to data collection; and offers opportunities to advance the standardized collection and use of disability-related data. </sec> <sec> <title>METHODS</title> A qualitative, two-pronged approach was employed, consisting of a literature scan and 13 key informant interviews with stakeholders from health systems, research institutions, and policymaking and advocacy organizations. Data were analyzed using a structured abstraction matrix to identify themes related to data collection practices, use cases, challenges, and opportunities to improve standardization and interoperability. </sec> <sec> <title>RESULTS</title> We identified three use cases for collecting, documenting, and exchanging disability-related data: (1) preparing for patient visits, (2) improving care quality, (3) facilitating care transitions, and (4) advancing equity research. However, findings from the literature scan and key informant interviews revealed that most health care organizations do not routinely collect disability status or accommodation needs data. Among those that do, they employ varied and non-standardized approaches, hindering the ability of health care organizations to provide legally mandated accommodations and deliver equitable, patient-centered care. </sec> <sec> <title>CONCLUSIONS</title> Conclusions: Standardized and systematic collection of disability status and accommodation needs data is critical to advancing health equity, improving care quality, and supporting patient-centered care for people with disabilities. The inclusion of “disability status” as a requirement for certified health information technology, including electronic health records (EHR), beginning in 2026 represents a critical step toward more standardized data collection. Efforts to strengthen data collection practices should include workflows for documenting a patient’s self-reported disability and requested accommodations, enhancing health information technology systems, engaging stakeholders across health care settings, and promoting adoption of national standards to ensure disability-related data are accurate, actionable, and interoperable. </sec>