Health Disparities in the Medical Record and Disability Determinations: Proceedings of a Workshop (2024)
Chapter: 1 Introduction
1
Introduction
The Social Security Administration (SSA) administers two programs that provide cash payments to people with disabilities: the Social Security Disability Insurance (SSDI) program and the Supplemental Security Income (SSI) program. Disability insurance aims to protect workers contributing to the program through payroll tax deductions from lost earnings arising because of impairment, while SSI’s goal is to guarantee a base income for the poorest of the aged, blind, or disabled population (Meseguer, 2013). SSA relies on a network of local SSA field offices and state-run, federally funded agencies called Disability Determination Services (DDSs) to process disability claims. After the field offices verify nonmedical eligibility requirements, the DDSs develop the medical evidence to support a disability claim using evidence from the individual’s electronic health record (EHR).
Medical records are not perfect, however, particularly in the manner in which they represent disparities in access to care, the availability of specialists, and social determinants of health. They can also be flawed because of clinician bias, whether explicit or implicit, as reflected in the language they use when describing an individual’s condition. These inequities and disparities can hinder SSA disability determinations.
To better understand the effect of health inequities and the manner in which they affect SSA’s disability programs, the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine hosted a 1.5-day workshop on April 4–5, 2024, that examined the variety of different experiences with the U.S. health care system common to individuals with disabilities facing barriers—including members of racial or ethnic minorities,
people with low income, people who have limited English proficiency, those facing homelessness, or people with mental illness—and the consequences of those different experiences on an individual’s health status, medical record, and SSA disability determinations. Box 1-1 provides the statement of task for the workshop, which SSA funded.
BOX 1-1
Statement of Task
A planning committee of the National Academies of Sciences, Engineering, and Medicine will plan and host a public workshop on the variety of different experiences with the U.S. healthcare system common to individuals facing barriers,a including members of racial or ethnic minorities, and the consequences of those different experiences on an individual’s health status and medical record, which is relevant to the U.S. Social Security Administration (SSA) in disability determinations. The workshop shall include presentations with a focus on how individual’s different experiences can manifest in records, as well as medical advances, developments, and research related to health inequities in the United States.
The workshop will feature invited presentations and panel discussions on topics such as:
- The primary social determinants of health affecting people facing barriers and members of racial or ethnic minorities, how they might be reflected in medical records, and how they differ between and among various groups.
- Societal, systemic, racial, cultural, or personal characteristics that can serve as impediments to people facing barriers and members of racial or ethnic minorities seeking or receiving medical services and, in particular:
- How those characteristics may be recorded or manifest in traditional and other healthcare records;
- How the medical records of people with those characteristics might differ from the general population; and
- How the impact of those impediments can be lessened or averted, particularly in the context of consultative examinations ordered by SSA.
- The lived experiences of people facing barriers and members of racial or ethnic minorities as they interact with SSA,
- healthcare systems, and alternative sources of medical care, including:
- How those experiences impact future use of or trust in medical or healthcare services;
- Disconnects between the health-related reports made by people facing barriers and the information recorded by their healthcare providers;
- Are there alternative sources of medical care utilized by some people facing barriers; and
- Areas of difficulty or confusion when making a disability application, providing SSA with medical and other records, or attending a consultative examination.
- An overview of recent or emerging research suggesting particular widely-used tests or procedures are not as accurate or appropriate as traditionally believed for certain sub-populations and, for each, whether alternate tests or procedures exist which have been found to be accurate and appropriate for the population in question.
The planning committee shall develop the agenda for the workshop sessions, select and invite speakers and discussants, and moderate the discussions. The speakers and discussants will have the experience and knowledge to speak to the differences experienced by various racial and ethnic populations and other groups of people facing barriers. A proceedings of the presentations and discussions at the workshop will be prepared by a designated rapporteur in accordance with institutional guidelines.
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a Including people with low income, limited English proficiency, facing homelessness, or with mental illness.
As Michael Goldstein, director of SSA’s Office of Disability Policy, noted in his introductory remarks to the workshop, inequities in providing health care services are “an unfortunate reality” of the U.S. health care system. He explained that understanding the effect of health disparities on SSA’s disability programs requires understanding where these disparities come from and how they affect the accuracy of an individual’s medical record, saying
We need that information first, to be able to identify [affected] cases, and second, to unravel the accurate from the misleading evidence within those cases, which I am not disillusioned will be an easy process.
He added that SSA does provide guidance to health care providers on the types of evidence SSA needs to make a disability determination, and it offers questionnaires that claimants or people who know them well can complete. “Ultimately, our adjudicators consider all the evidence in an individual’s case, not just medical evidence and not just that from doctors or other health care providers.”
This Proceedings of a Workshop summarizes the presentations and discussions, reflecting the speakers’, panelists’, and participants’ broad range of views and ideas. The speakers’ presentations (as PDFs and video files) are available online.1
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1 The workshop speakers’ presentations are available at https://www.nationalacademies.org/event/41744_04-2024_health-disparities-in-the-medical-record-and-disability-determinations-a-workshop.
