Standardized Disability EHR Data Collection Key to Health Equity

Achieving health equity has been a priority throughout the healthcare industry. But according to an article published in Health Affairs, most health systems lack a standardized approach to disability EHR data collection, which impedes efforts to address inequities.

Past studies have shown that disability data is often absent in EHRs. Other times, the information may be buried in charts or documented in a way that healthcare teams cannot easily reference

The lack of data collection restricts organizational efforts to provide mandated disability accommodations and modifications that ensure equitable care, as required by several laws, including the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA) of 1990.

This is a cause for concern, especially because people with disabilities already face significant inequities when interacting with the healthcare system, such as clinician biases and inaccessible medical environments.

Data collection is essential for identifying disparities and facilitating evidence-based interventions that could help achieve greater equity, the Health Affairs authors stated.

Currently, there is an absence of federal policy requiring standards for collecting disability status.

Even though Section 4302 of the Affordable Care Act contains provisions to strengthen federal data collection efforts, health systems do not perceive the act as a mandate to collect disability data.

“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,” Megan A. Morris, founder and director of the Disability Equity Collaborative, and colleagues wrote in the article.

“Unfortunately, the lack of standardized collection of patients’ disability status within EHRs has limited progress toward addressing inequities for people with disabilities.”

The authors made several recommendations for standardized disability data collection, which they said would promote health equity.

First, disability status data should be included with other demographic data elements, Morris and colleagues pointed out.

In July 2022, ONC released the United States Core Data for Interoperability Version 3 (USCDI v3), establishing a national standard for documentation of patient disability status in the EHR. However, the authors pointed out that the USCDI standards include disability data in the health status category instead of the demographic category of the EHR.

The authors urged the healthcare industry to view disability as more than a health status but a part of the patient’s identity.

“Healthcare disparities are, in part, an outcome of civil rights violations, discriminatory healthcare system operations, and interpersonal discrimination,” the authors said. “Historically, however, disability is frequently conceptualized as a medical condition resulting from a disease, illness, or accident. Conversely, a civil rights perspective views disability as a characteristic that places persons with disabilities at risk for marginalization and discrimination.”

Secondly, the authors stated that disability status should be patient-reported instead of linked to a clinical diagnosis or benefit determination.

“Similar to other demographic characteristics, patients should have the right to self-identify as having a disability and not require an external person determine whether or not the patient belongs to a certain community,” Morris and colleagues said. “Again, the goal is to identify and address disparities experienced by persons with disabilities who are a marginalized population.”

When a clinical diagnosis defines a disability status, that information is intended for care planning, such as medication prescription. The researchers asserted that self-reported data is better for improving health disparities.

Lastly, a standardized set of disability status questions are critical to health equity and interoperability.

Currently, HHS recommends using the American Community Survey (ACS) disability questions, developed in 2008, which inquire about patients’ functional abilities.

Although the ACS disability questions remain the prominent way to facilitate interoperability across data sets, other standardized questions have started to be incorporated into national surveys.

Recently, the United Nation’s Washington Group on Disability Statistics released a set of disability questions, including inquiries regarding speech and language disabilities.

“We recommend that the ACS questions plus the Washington Group communication disability question be used to collect patients’ disability status,” the authors stated. “This approach promotes interoperability between the EHR and other US population surveys via the ACS questions, but also includes a critical question pertaining to communication disability.”

The authors urged the healthcare industry to consider the recommendation listed as they hold value for achieving health equity.

“Federal regulation for the systematic collection of patients’ disability status in our healthcare system is urgently needed,” the authors stated. “Standard disability data elements are necessary for interoperability, including ensuring these data are patient-reported and a core component of all demographic information. Without fast federal action, more than a quarter of our nation will continue to be overlooked in efforts to make healthcare services more equitable.”