The Electronic Health Record (EHR) is an essential tool for linking demographic and clinical data within and across healthcare systems and to public health databases. Data collected within the EHR are critical to understanding and addressing the inequities that adversely affect health and healthcare outcomes in marginalized communities, including those with disabilities. Unfortunately, the lack of a standardized collection of patient disability status within the EHR limits progress to address inequalities for people with disabilities.
A recent estimate is that 27% of adults in the United States have a disability. Persons with disabilities experience significant inequities in access to quality health care services due to factors such as clinician bias and inaccessible health care environments. Currently, most healthcare systems do not systematically collect patient disability status, hampering efforts to identify and address these factors. In addition, the lack of data collection is a problem for mandated disability facilities and facilities, as required by the Rehabilitation Act of 1973, the Americans with Disabilities Act of 1990 (ADA), and Section 1557 of the Patient Protection Act of 2010. It hinders the organization’s efforts to provide remediation that guarantees equitable care. Affordable Care Act (ACA).
Federal and State Requirements and Standards for Documenting Disability Status
Section 4302 of the ACA, entitled “Understanding Health Disparities: Data Collection and Analysis,” states that “federally enforced or support medical or public health programs, activities or investigations. Data from an Applicant, Recipient, or Participant. This includes “individuals who receive health care items or services under such programs or activities.” Unfortunately, the requirements in this section are not implemented or enforced. This may be due in part to guidance issued by the Office of the Assistant Secretary for Planning and Evaluation regarding Section 4302. The Guidance Document only describes the application of Section 4302 to the National Census. As a result, health care plans and organizations do not view Section 4302 as an obligation to collect disability status. As an illustration of this, the Health Care Resource Services Administration does not require grantees to collect disability status as part of a unified data system. Sponsored by Section 4302. This leads to significant gaps in the documentation of the quality and equity of care provided to persons with disabilities living at the intersection of marginalized communities (e.g., those seeking care at federally accredited health centers and local health clinics). patient, etc.).These communities are known to have a high prevalence of the disorder than the general public.
In the absence of federal policy, states are beginning to implement laws and standards for collection of disability status by medical institutions. Washington state legislature requires hospitals to include patient race, ethnicity, sexual orientation, gender identity, first language and disability status in all discharge reports as of January 1, 2023 passed a new rule. In 2020, Oregon enacted new rules requiring health care providers to collect and report race, ethnicity, language and disability data related to her COVID-19 to the Oregon Department of Health. . States should be commended for these efforts, but the lack of national standards and policies can lead to differences in what and how data is collected, hindering interoperability efforts and country-level comparisons. .
In July 2022, the Office of the National Coordinator for Health Information Technology will establish national standards for documenting patient disability status in EHRs using the United States Core Data for Interoperability (USCDI) Version 3 standards. You’ve taken the first step towards setting it up. The standard included a failure status data element. While the inclusion of this data element is important, the guidance published for the Disability data element is unfortunately vague and may not capture the information required for proper response, leading to inconsistent implementations.
Recommendations for Additional Guidance in Implementing Problem Condition Data Elements
1. The disability status data element should be included with other demographic data elements.
USCDI standards now include disability data in the EHR’s “Health Condition” category instead of the “Demographics” category. Disparities in healthcare are, in part, the result of civil rights violations, discriminatory healthcare system operations, and interpersonal discrimination. However, historically, disability is often conceptualized as a medical condition resulting from an illness, illness, or accident. Conversely, the civil rights perspective views disability as a trait that puts persons with disabilities at risk of marginalization and discrimination. The full inclusion of disability as a basis for discrimination in proposed § 1557 rules also includes a lengthy “data collection” section discussing ways to collect data relevant to the enforcement of civil rights, and the separation between data and civil rights. Strengthen strong links. Moreover, from a civil rights perspective, disability is a bona fide part of an individual’s identity, the result of interactions between individuals and environmental factors, and prevents them from participating in the wider community. A civil rights perspective on disability is needed because the primary purpose of disability documentation is to identify potential disparities in health and healthcare outcomes. Therefore, I would argue that disability status should be included in other demographic data.
2. Disability status should be patient-reported and independent of clinical diagnosis and benefit decisions
In line with the civil rights perspective of disability, disability status should not be tied to clinical diagnosis or assessment, but should reflect the patient’s own perspective on disability status. As with other demographic characteristics, patients should have the right to identify themselves as having a disability and should not have outsiders determine whether they belong to a particular community. . Again, the goal is to identify and address the gaps experienced by disabled people, a marginalized population. In contrast, clinical diagnoses, which can only be assigned by certain providers, inform care planning (e.g., what medications to prescribe) and are used for billing purposes. These sets of goals can be different and conflicting. Studies have also shown that relevant diagnostic codes have not been consistently applied to populations with disabilities and are therefore unreliable methods of identifying who has the disorder. , disability status should be independent of benefit status, such as the patient receiving Social Security disability insurance. Someone may report disability and need medical facilities but may not be eligible or need disability benefits or vice versa.
3. A standardized set of failure status questions is needed to promote interoperability
There are currently no criteria for questions to use for EHR failure status data elements. Identifying a concise, actionable set of questions is difficult, in part because the types and definitions of disability are so diverse. After passage of Section 4302 of the ACA, the Department of Health and Human Services recommended using the American Community Survey (ACS) disability questions. First developed in 2008, the ACS disability questions are designed to identify population-level estimates of people with disabilities. A series of six questions asked about the respondent’s functional abilities (e.g., “severe visual impairment”) and included perceptions of various disabilities that interfered with tasks normally associated with independent living in the community outside the institution. increase. While these questions remain the predominant questions in many federal surveys, supporting interoperability between data sets, recently questions from the Washington Group of the United Nations on Disability Statistics have also been incorporated into national surveys. . The Washington Group question, too, he consists of six questions, which are short-spoken and, importantly, include questions about speech disorders, collectively called communication disorders. Since 10% of the adult population in the United States have communication disorders, it is very important to include questions about communication disorders. Additionally, the most common ADA complaint in healthcare is the lack of effective communication for patients with communication-related disorders.
We recommend that you collect patient disability status using the ACS questions and the Washington Group Communication Disorders Question. This approach facilitates interoperability between other US census surveys via EHR and ACS questions, but also includes important questions about communication disorders. This unified approach allows disability data to be linked across healthcare environments and aggregated into public health information systems. Although the recommended disability questions do not cover all disabilities, including psychiatric disorders and some developmental disorders, current evidence and use in national surveys suggest that using the ACS questions may be Best to start. The inclusion of the Washington Group question on communication disorders broadens the categories of disorders captured by this approach. Similar to recent investments to update racial and ethnic data standards, federal investments are needed to improve and identify questions and methods that more comprehensively identify people with different types of disabilities. .
There is an urgent need for federal regulation to systematically collect patient disability status in our healthcare system. Standard disability data elements are required for interoperability, including ensuring that these data are patient-reported and a core component of all demographic information. Without swift federal action, more than a quarter of her in the country will continue to be overlooked in efforts to make health services more equitable.
