In medical school, we spend a lot of time learning how to collect a patient’s medical history. We practice structured asking specifically formulated questions to develop “muscle memory” and allow us to focus on the subtle content of our conversations. But many of us don’t to study how to ask patients about disability, whether it affects their daily lives, and what conditions they need to optimize communication and quality of life.
Lack of training – combined with societal disability biases shared by many physicians – jeopardizes our care for patients with disabilities. For example, a recent study found that more than a third of American doctors knew small or anything about their legal responsibilities under the Americans with Disabilities Act, which includes the provision of smart devices in a health care setting. Additional data from this national survey showed that only 40 percent of doctors felt very confident what they could provide the same quality of care to patients with disabilities and patients without disabilities. These strands of compromised care for this population contribute to adverse health outcomes.
An little-recognized means of improving the quality of care for patients with disabilities is the electronic medical record (EHR). E-accounting is a ubiquitous part of the teaching of medical students of my generation. Along with learning how to collect a medical history, we will learn how to use EHR to write organized notes, view important recurring events that occur between medical visits, and anticipate additional services needed. Healthcare professionals also rely on EHR as a capsule of vital information about their patients.
Reliable use of EHR is an opportunity to improve the quality of our disability and housing documentation – and thus to improve the quality of care for patients with disabilities.
Ease of access and standardization
In February 2014, the Ministry of Health and Social Services (HHS) proposed Fr. rule in “Electronic Health Card (EHR) Certification Criteria; Update Interactions and Improve Regulations, ”which required the EHR to include the ability to record disability status. Informed from Section 4302 of the Affordable Care Act, this report also suggested seven questions to ask patients related to disability, and suggested contributions on them. A later 2020 study that surveyed patients with disabilities about proposed changes in the health care system found that almost all patients prefer that their disability data be in the EHR and be available to all of their care teams. In 2022, significant variability in disability and placement records persists – although these data are largely absent in EMDs, they are sometimes recorded in charts or documented in limited so that care crews can’t easily help.
EHRs should contain a framework for documenting the patient’s disability type, disability history, placement required in health care facilities, autonomy in daily life (ADLs), and preferred language related to disability. All documented information about disability should come from the patients themselves – questions should be patient-centered and include different ways of identifying patients. It should also be possible to document changes in these indicators over time. The standardized EHR structure, in addition to facilitating documentation, ensures that we consistently review and accept the full range of disabilities that patients may have, including disabilities that are invisible.
Following the standardization of the inclusion of patient disability status in the EHR, it is important that these additions be communicated to all members of the patient care teams. Changes in systemic capabilities will not lead to significant improvements in disability documentation unless health professionals, staff, and trainees are trained in relevant information documents based on their clinical appointments. Federal policies that provide for standardized completion of this information and, over time, tie incentives to hospital completion, would also improve the global entry of disability data into the EHR. This can take the form of including disability in the criteria for significant use of EHR developed by the Office of the National Health Information Technology Coordinator at HHS.
Collection and continuity over time
Surveying patients with disability in the EHR during clinic visits is just one of the mechanisms for collecting this data 27 percent of Americans have disabilitiesbut we need to focus on more proactive strategies, especially for documenting placements. One study found that telephone disability status and placement of new patients in the academic medical center through trained staff increased documentation rates from 9.5 percent to 53.5 percent. There were no reports of patient concern when asked about their disability for inclusion in their record. To obtain information for the millions of patients whose disability data are part of existing EHR in other health systems, interoperability will greatly accelerate progress.
Growth in academic medicine
Incorporating disability in a standard way into the EHR can impact health education and innovation. In particular, for interns, the expectation of the inclusion of this data will push for additional training programs and mentoring in an approach to a culturally modest discussion of disability with patients in clinical meetings. Important in this discussion is the recognition that not everyone with a disability can recognize themselves as disabled. Therefore, language on this topic should take into account the preferences and views of people with conditions that affect how they perform their ADL. A link to how all patients are usually asked about disability, and the importance of recording this to ensure continuity in future visits, facilitate sensitivity to the approach to this topic for both trainees and patients, and improve record keeping. It will also naturally integrate with other sensitive elements of the story-gathering paradigm and show listeners that studying and adapting our patients ’disabilities is very important.
From a health care perspective, this availability of documentation will serve as a reference point to determine whether investment in new assistive technologies and housing is needed for patients. This will contribute to the value-based care of people with disabilities, allowing the development and adaptation of quality indicators to this category of the population. The availability of reliable data on patients with disabilities in the health systems reported by patients will also create opportunities for research targeting this population. Access to representative information about patients with various disabilities and their comorbidities, social determinants of health and outcomes will enable health service researchers to combat differences in health in this continuing minority. off in research.
Our commitment in the field of medicine to providing fair and quality care to patients with disabilities requires reform in several sectors, from educational programs to trend-based learning and health care. Recently, when the COVID-19 pandemic, disability-based recommendations and data on how SARS-CoV-2 affected people with disabilities, were largely absent due to lack patient disability information. Ableism and the clear prioritization of certain types of bodies and minds over others are obstacles to progress in these sectors.
Against the background of necessary and ongoing reform, all members of the health care team working with patients with disabilities have a common experience of referring to their EHR. Thus, the introduction of standard disability documentation in the EHR can centralize our efforts to improve care for patients with disabilities – it will encourage regular clinical discussions with all patients about their disability, help us identify and invest in conditions that patients may need. and promote research that contributes to our understanding of the inequalities experienced by patients with disabilities and ways to address them.
The author would like to thank Risha Agravala, MD, professor at Northwestern Feinberg School of Medicine, Lisa I. Ietzoni, MD, professor at Harvard Medical School, and Samantha Schrott, PhD in Northwestern School of Management. in discussing this topic.