The electronic health record (EHR) is an essential tool for linking demographic and clinical data within and across health care systems, as well as to public health databases. Data collected within the EHR are crucial for understanding and addressing inequities that negatively impact health and health care outcomes of marginalized communities, including persons with disabilities. Unfortunately, the lack of standardized collection of patients’ disability status within EHRs has limited progress toward addressing inequities for people with disabilities.
In recent estimates, 27 percent of US adults have a disability. Persons with disabilities experience significant inequities in access to high-quality health care services due to factors such as clinician biases and inaccessible medical environments. Currently, the vast majority of health care systems do not systematically collect patients’ disability status, impeding efforts to identify and address these factors. The lack of data collection also impedes organizations’ efforts in providing mandated disability accommodations and modifications that ensure equitable care, as required by the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA) of 1990, and Section 1557 of the 2010 Patient Protection and Affordable Care Act (ACA).