Research has demonstrated that persons with disabilities experience a myriad of health and health care disparities. Unfortunately, a significant obstacle exists in addressing these disparities: the majority of health care organizations do not systematically document patients’ disability status in the electronic health record (EHR). This is problematic for two reasons. First, documenting disability status is essential to track quality of care delivered to patients with disabilities and to conduct research within the health care setting aimed at improving the care delivered to patients with disabilities. Second, health care organizations need to systematically identify patients who need disability-related accommodations, such as height-adjustable examination tables. 

We have embarked on a series of studies to address this gap, including studies to understand patients’ comfort and willingness to disclose a disability status and to identify disability status questions health care organizations should collect. In 2019, at a centralized call center that served 53 primary care clinics at UCHealth in Colorado, we trained agents to collect disability status during new patient registration calls. In the 6 weeks of data collection, the call center received 3,673 calls. Documentation of disability status in the EHR for newly registered patients increased from less than 10% to over 50%, which was maintained for an additional 8 weeks. There were no patient complaints and call time increased by an average of 18 seconds.

As a result of this work, we began to receive calls from health care organizations across the country interested in implementing documentation of patients’ disability status. To support these organizations, we began a learning community that includes 50+ health care systems who meet bi-weekly to support each other in advancing disability equity in their own organizations. Additionally, we developed a national workgroup on documenting disability status which includes researchers, advocates, policy makers, EHR vendors, insurance providers, health care systems, and other stakeholders. With our research and stakeholder support, we have had the opportunity to advocate for policy change, including providing a presentation and materials for the Office for the National Coordinator for Health Information Technology (ONC), which is the federal body that produces guidelines and standards for EHRs. In July 2022, ONC released the most recent standards which included the disability status data element. Our next step is to develop research and implementation guides that support health care organizations in implementing collection of disability status across their entire organization and to then use the information to inform the delivery disability accommodations at the point of care.