In a recent article published by Health Affairs, it was noted that efforts to reduce disparities are hampered by the majority of health institutions’ lack of a consistent method for collecting disability EHR data. Studies carried out previously have demonstrated that EHRs frequently lack disability data. In other instances, the data could be hidden in charts or recorded in a way that makes it difficult for healthcare providers to refer to it. Several laws, including the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA) of 1990, require organizations to provide required disability accommodations and modifications that ensure equitable care; however, the lack of data collection limits these efforts. This is a cause for concern, particularly given the significant inequities that people with disabilities already experience when interacting with the healthcare system, such as biases on the part of healthcare providers and inaccessible medical settings.
At present, there is no federal guideline dictating requirements for standards for gathering disability status. Health systems do not view the Affordable Care Act’s Section 4302 as a duty to collect disability data, despite the fact that it contains provisions to increase federal data collection efforts. It is stated in the article: “Data collected within the EHR are crucial for understanding and addressing inequities that negatively impact health and healthcare outcomes of marginalized communities, including persons with disabilities. The authors also put forward several suggestions to standardize the collection of disability data, portraying the usefulness of doing so to develop health equity. The researchers noted that demographic data elements should also include information about handicap status. The United States Core Data for Interoperability Version 3 (USCDI v3), which established a nationwide standard for patient handicap status documentation in the EHR, was released by ONC in July 2022. Instead of the demographic category of the EHR, the authors noted that the USCDI guidelines include disability data in the health status area. Authors advised the healthcare sector to see disability as an integral component of the patient’s identity rather than just a health condition. According to the authors, a patient’s reported disability status should be used to determine benefits rather than a clinical diagnosis. A clinical diagnosis that specifies a disability status is meant to be used in care planning, including the prescribing of medications. Self-reported data, according to the researchers, is preferable for reducing health disparities. Finally, for health equity and interoperability, a standardized set of disability status questions is essential.