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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).
Section 4302 of the ACA, titled “Understand health disparities: Data collection and analysis,” requires “any federally conducted or supported health care or public health program, activity or survey” to collect race, ethnicity, sex, primary language, and disability status data from “applicants, recipients, or participants,” including “individuals receiving health care items or services under such programs and activities.” Unfortunately, the requirements of this section have not been implemented or enforced. This is likely due in part to guidance issued by the Office of the Assistant Secretary for Planning and Evaluation regarding Section 4302. The guidance document only discusses the application of Section 4302 to national population surveys. Consequently, health systems and organizations do not view Section 4302 as a mandate to collect disability status. As a demonstration of this, the Health Resources and Services Administration does not require their grantees to collect disability status as a part of their Uniform Data System, despite requiring collection of race, ethnicity, primary language, sexual orientation, and gender identity data under the auspices of Section 4302. This leads to large gaps in documentation of the quality and equity of care provided to persons with disabilities who live at the intersection of marginalized communities (such as those patients seeking care at federally qualified health centers and rural health clinics); these communities have a known higher prevalence of disabilities than the general population.
In the absence of federal policies, states have begun to implement laws and standards for collection of disability status by health care organizations. The state of Washington legislature passed new rules requiring hospitals, as of January 1, 2023, to include patients’ race, ethnicity, sexual orientation, gender identity, primary language, and disability status in all discharge reports. In 2020, Oregon implemented new rules requiring health care providers to collect and report race, ethnicity, language, and disability data related to COVID-19 to the Oregon Health Authority. While states should be lauded for these efforts, the lack of national standards and policies will likely lead to differences in which data are collected and how, impeding interoperability efforts and national-level comparisons.
In July 2022, the Office of the National Coordinator for Health Information Technology took the first steps toward setting a national standard for documentation of patients’ disability status in the EHR with their United States Core Data for Interoperability (USCDI) Version 3 standards. Included in the standards was a disability status data element. While the inclusion of this data element is important, the guidance issued around the disability data element unfortunately is vague and may fail to capture information needed for appropriate accommodation, potentially leading to inconsistent implementation.
Currently, the USCDI standards include disability data in the “health status” category, rather than within the “demographic” category of the EHR. Health care disparities are, in part, an outcome of civil rights violations, discriminatory health care system operations, and interpersonal discrimination. 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. The full inclusion of disability as a basis of discrimination in the federal Section 1557 proposed rule, which also has a lengthy “data collection” section discussing ways to capture relevant data for civil rights implementation, reinforces the powerful link between data and civil rights. Moreover, from a civil rights perspective, disability is a bona fide part of one’s identity, as well as an outcome of the interaction of individuals with environmental factors that prevent broader community participation. Since a primary goal of disability documentation is to identify potential disparities in health and health care outcomes, a civil rights perspective of disability is needed. Therefore, we argue that disability status should be included with other demographic data.
Aligned with a civil rights perspective of disability, disability status should not be linked to a clinical diagnosis or assessment but should reflect a patient’s own perspective of their disability status. 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. Again, the goal is to identify and address disparities experienced by persons with disabilities who are a marginalized population. In contrast, a clinical diagnosis, which can only be assigned by certain medical providers, is used to inform care planning (for example, what medication to prescribe) and for billing purposes. These sets of goals are different and can be contrary. Research has also demonstrated that for populations with disabilities, relevant diagnosis codes are inconsistently applied, and therefore are an unreliable method for identifying who has a disability. Finally, disability status should be independent of benefit status, such as the patient receiving Social Security Disability Insurance. While someone might report a disability and need health care accommodations, they might not qualify or need disability benefits, or vice versa.
Currently, no standards exist for what questions to use for the disability status data element of the EHR. Identifying a concise and implementable set of questions is challenging, due in part to the wide diversity of disability types and definitions. Following the passage of Section 4302 of the ACA, the Department of Health and Human Services recommended using the American Community Survey (ACS) disability questions. The ACS disability questions, first developed in 2008, are designed to identify population-level estimates of persons with disabilities. The set of six questions inquires about respondents’ functional abilities (for example, “serious difficulty seeing”) and includes the recognition of a range of disabilities that interfere with tasks that are typically associated with living independently in the community outside of institutions. While these questions are still the predominant questions in many federal surveys, supporting interoperability across data sets, recently questions from the United Nation’s Washington Group on Disability Statistics have also been incorporated into national surveys. The Washington Group questions, also a set of six questions, have briefer wording and importantly include a question on speech and language disabilities, collectively referred to as communication disabilities. Inclusion of a communication disability question is critical as 10 percent of the US adult population has a communication disability. Additionally, the most frequent ADA complaint in the health care setting is the lack of effective communication for patients with communication-related disabilities.
We recommend that the ACS questions plus the Washington Group communication disability question be used to collect patients’ disability status. 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. This uniform approach allows disability data to be linked across health care settings and aggregated into public health information systems. While the recommended disability questions are not comprehensive of all disabilities, including mental health disabilities and some developmental disabilities, the current evidence and use in national surveys make using the ACS questions the best place to start. Including the Washington Group question about communication disability helps to broaden the categories of disability captured with this approach. Federal investment, akin to the recent investment in updating race and ethnicity data standards, is needed to improve and identify questions and methods that more comprehensively identify people across the range of disability types.
Federal regulation for the systematic collection of patients’ disability status in our health care system is urgently needed. 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 health care services more equitable.
DOI: 10.1377/forefront.20221026.83825

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