The Need For Disability Documentation In The Electronic Health Record

The Need For Disability Documentation In The Electronic Health Record

In medical school, we spend a lot of time learning how to take a patient’s medical history. We practice asking specifically worded questions in a structured way to develop “muscle memory” and allow us to focus on the nuanced content of our conversations. But many of us do not learn how to ask patients about disability, whether it affects their daily lives, and what accommodations they need to optimize communication and quality of life.

This lack of training — when coupled with societal biases about disability, which many physicians share — compromises our care of patients with disabilities. For example, a recent study found that more than one-third of US physicians knew little or nothing about their legal responsibilities per the Americans with Disabilities Act, which includes providing reasonable accommodations in the health care setting. Additional data from this national survey found that only 40 percent of physicians felt strongly confident that they could provide the same quality of care to patients with disabilities and patients without disabilities. These threads of compromised care for this population contribute to adverse health outcomes.

An underrecognized medium for improving the quality of care for patients with disabilities is the electronic health record (EHR). Electronic record-keeping is a ubiquitous part of training for medical students of my generation. Alongside learning how to take a medical history, we learn how to use the EHR to write organized notes, review important interval events that occur between medical visits, and anticipate ancillary services needed. Health care professionals also rely on the EHR as capsules of vital information about their patients.

Robust use of the EHR is an opportunity to improve the quality of our documentation of disability and accommodations — and thereby improve our quality of care for patients with disabilities.

Ease Of Access And Standardization

In February 2014, the Department of Health and Human Services (HHS) proposed a rule in Electronic Health Record (EHR) Certification Criteria; Interoperability Updates and Regulatory Improvements ”that required EHRs to include the capability to record disability status. Informed by Section 4302 of the Affordable Care Act, this report also proposed seven questions to be asked to patients surrounding disability and sought input on these. Later, a 2020 study that interviewed patients with disabilities about proposed changes in the health care system identified that almost all patients preferred for data about their disability to be in the EHR and available to all their care teams. In 2022, there remains significant variability in recording disability and accommodations — while these data are largely absent in EHRs, they are sometimes buried in charts or documented in a limited way that care teams can not easily reference.

After standardizing the incorporation of the disability status of patients into EHRs, it is critical for these additions to be communicated to all members of patient care teams. Changes in system capabilities will not significantly improve disability documentation if health care professionals, staff, and trainees are not educated on appropriately documenting information based on their clinical encounters. Federal policies that mandate the standardized completion of this information and tie completion to hospital incentives over time would also globally improve input of disability data in the EHR. This could take the form of including disability in meaningful use criteria for EHRs produced by the Office of the National Coordinator for Health Information Technology in HHS.

Collection And Continuity Over Time

A standardized EHR section on disability can perpetuate inaccuracies and assumptions that harm patients unless there are multipronged opportunities for patients to access and engage with it. We should appraise the section of disability status in a patient’s EHR as we do all sections of a thorough history — each is a fluid and important element of the patient’s identity that requires prime screen space and time for active patient-clinician discussion in the health record and clinical encounter, respectively. The 2020 modifications to the Health Insurance Portability and Accountability Act (HIPAA) privacy rule and the 21st Century Cures Actwhereby patients have access to their health records, amplifies the value in welcoming patient leadership and guidance in describing their disability identity in documentation.

Querying patients on disability in the EHR within clinic visits is just one mechanism to collect this data for the 27 percent of Americans with disabilities, but we should target more proactive strategies, especially for documenting accommodations. One study found that telephone outreach regarding disability status and accommodations to new patients in an academic medical center via trained staff increased documentation rates from 9.5 percent to 53.5 percent. There were no reports of concerns from patients when asked about their disability for inclusion in their record. To retrieve information for millions of patients whose disability data are part of existing EHRs in other health systems, interoperability would significantly accelerate progress.

Growth In Academic Medicine

Inclusion of disability in a standardized way in the EHR can affect education and innovation in health care. Specifically for trainees, the expectation to include this data would prompt additional curricular grounding and mentorship in approaching a culturally humble discussion about disability with patients in clinical encounters. Important in this discussion is recognizing that not everyone with a disability may identify as having a disability. Therefore, language on this topic must be sensitive to preferences and views of persons with conditions that affect how they perform their ADLs. Referencing how all patients are routinely asked about disability and the importance of recording this to ensure continuity at future visits would ease sensitivity to approaching this topic for both trainees and patients and improve documentation adherence. It would also naturally integrate with other sensitive elements of the history-taking paradigm and show trainees that learning about and accommodating the disabilities of our patients is essential.

From a health systems lens, this availability of documentation would serve as an anchor point to determine if investment in newer assistive technologies and accommodations for patients is needed. It would facilitate value-based care for persons with disabilities by allowing quality metrics to be developed and tailored to this population. Having reliable patient-reported data on patients with disabilities in health systems would also create research opportunities targeting this population. Access to representative information about patients with different disabilities and their comorbidities, social determinants of health, and outcomes would enable health services researchers to combat health disparities in this minority population, which continues to be excluded in research.

Our commitment in medicine to provide equitable and high-quality care to patients with disabilities requires reform in multiple sectors, from educational curricula to bias training to public health. As recently as the COVID-19 pandemic, disability-inclusive guidance and data on how SARS-CoV-2 affected persons with disabilities was largely missing due to a lack of data on the disability status of patients. Ableism and the explicit prioritization of certain types of bodies and minds over others are roadblocks to progress in these sectors.

Amidst necessary and ongoing reform, all members of the health care team who interface with patients with disabilities have the shared experience of referencing their EHRs. Implementing standard documentation of disability in the EHR can thus centralize our efforts to better our care for patients with disabilities — it will prompt regular clinical conversations with all patients about their disabilities, help us recognize what accommodations patients may need and invest in these, and facilitate research that furthers our understanding of inequities experienced by patients with disabilities and how to address them.

Author’s Note

The author would like to thank Rishi Agrawal, MD, MPH, professor at Northwestern Feinberg School of Medicine, Lisa I. Iezzoni, MD, MSc, professor at Harvard Medical School, and Samantha Schroth, MD and / PhD candidate at Northwestern Feinberg School of Medicine for their guidance in discussion of this topic.


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