Epidemiologist, Disability and Health Promotion Branch, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia
Disclosure: Robyn Cree, PhD disclosed no relevant financial relationships
Adrianna Evans, MPH
Director, Preparedness and Disability Integration, Association of State and Territorial Health Officials (ASTHO), Arlington, VA
Disclosure: Adrianna Evans, MPH disclosed no relevant financial relationships.
| April 07, 2025
Editorial Collaboration
&
People with disabilities have a wide range of needs.
A person with a disability is someone with a condition of the body or mind that makes it more difficult for them to do certain activities and interact with the world around them.[1] Domains of disability can include seeing, hearing, mobility, cognition, or other functions of daily living. People with disabilities are part of every community.[1] Therefore, it is important that this demographic group is represented across all public health data collection efforts.[2,3]
Navigating transportation, communications, or the essential need for supports can present unique challenges for people with disabilities, potentially making emergencies, such as pandemics and natural disasters, especially dangerous.[4] People with disabilities are also more likely to have health conditions such as diabetes or depression,[5,6] further increasing their risk of negative impacts from disasters. As a result, people with disabilities are more likely to get sick, be injured, die, or be placed unnecessarily into long-term care facilities during or after emergencies compared to people without disabilities.[7-9]
Accurate health data are essential to ensure that people with disabilities receive the care, support, and resources they need during public health emergencies.
However, it is difficult to track and understand health disparities in people with disabilities because data systems do not comprehensively include disability as a demographic. Without timely identification, people with disabilities may be inadvertently excluded from public health preparedness and response activities. Healthcare providers can play an important role in better serving people with disabilities by routinely documenting disability status and type within medical records during healthcare encounters, such as emergency department visits. In this way, healthcare providers can support people with disabilities during public health emergency responses in the future. Healthcare systems can also support people with disabilities during emergency responses by giving healthcare providers the resources and time needed to accurately record disability information during medical encounters.
Syndromic surveillance tracks symptoms of patients in emergency departments, in near real-time, to help public health professionals and clinicians understand the impact of public health emergencies on communities.
The CDC-supported National Syndromic Surveillance Program (NSSP) is one system that public health professionals use to monitor public health emergencies. As of 2024, 80% of US emergency departments share electronic health data with CDC's NSSP, often within 24 hours.
The data that emergency departments provide are routinely collected by emergency clinicians and emergency department staff during healthcare visits, such as clinical diagnoses and free-text fields (eg, reason for visit). Public health professionals use these data to monitor health trends before, during, and after emergencies, in near real-time. For example, emergency department data from NSSP can be used to detect, understand, and monitor health events such as unusual levels of injuries or emerging infectious diseases.
Through NSSP, electronic health data from emergency department visits provide public health professionals with timely information to make decisions about interventions during an emergency and potentially reduce surge strain on the healthcare system.
However, historically there has been no way to identify people with disabilities as part of NSSP’s efforts to monitor emergency department data for public health emergencies or outbreaks. This constraint has limited the opportunities to provide timely information on how outbreaks and emergencies impact people with disabilities.
Information related to disability that emergency department clinicians and staff routinely document at the point of care can inform emergency response, resource allocation, and public health interventions.
Through a collaborative project, the CDC, Association of State and Territorial Health Officials, and Thought Bridge LLC worked with a scientific panel to create definitions to identify emergency department visits by people with disabilities using data currently included in NSSP. Panel members included data experts, people with disabilities, clinicians, health agencies, and epidemiologists. These new definitions contain lists of clinical diagnoses and free text related to disability organized by domain of disability — such as intellectual and developmental, hearing, vision, or mobility — that may be included in electronic health records (EHRs). While diagnostic codes do not map directly to functional limitations, it is likely that certain conditions can be reasonably expected to produce functional limitations (eg, someone with muscular dystrophy could reasonably be categorized as having a mobility disability).
Disability definition domains with examples of clinical diagnosis codes and free-text keywords
Note. Figure summarizes eight domains of disability included within the definition (ie, hearing, vision, mobility, cognition/central nervous system, intellectual and developmental, specific developmental, behavioral, and learning, self-care/independent living, and overall) with examples of clinical diagnosis codes and free-text keywords. Two additional domains (ie, mental health and chronic conditions) are not included in the disability definitions but can be combined with disability definitions to be examined as either disabilities or conditions among people with disabilities.
These new definitions can be used to monitor the health and well-being of people with disabilities during public health emergencies. Health departments can examine monitored outcomes, such as injury or infectious disease, by disability status and type to inform emergency response and share insights back with emergency departments to inform clinical practice.
Information related to disability that emergency department clinicians and staff routinely document on EHRs can help public health and healthcare personnel make informed decisions. This information improves national, state, and local capacity to respond to, detect, understand, and monitor health events among people with disabilities during emergencies.
While this is a step forward, there is much more to be done.
Ideally, clinicians and staff would have the infrastructure and tools in place to routinely ask patients about their disability status[10] and document this information consistently on EHRs,[11] similar to other demographics such as age, sex, or race and ethnicity. The new definitions rely on clinical diagnoses and chief complaints routinely documented on EHRs and will not identify all emergency visits by people with disabilities. Visits by people with lower support needs or non-apparent disabilities may be more likely missed. However, until disability is collected as a demographic at the point of care, diagnostic codes and free text captured on EHRs are sometimes the only way to identify people with disabilities within data systems.
Despite limitations, these new disability definitions can be used to identify important trends and serve as a signal of group variation for key outcomes of interest. The definitions can help serve as a stopgap to identify people with disabilities within NSSP while healthcare providers and public health professionals work collectively to address systemic issues related to collecting disability as a demographic at the point of care.
Emergency department clinicians and staff can help support people with disabilities during public health emergencies by:
Understanding how i nformation related to disability status and type routinely included on EHRs can be used for syndromic surveillance to help ensure people with disabilities are included in emergency preparedness, response, and recovery efforts.
Documenting disability status in addition to other important demographics (such as race and ethnicity) on EHRs when individuals seek care. Each diagnosis code and patient symptom entered into the EHR can enhance the data that CDC and public health practitioners use to protect communities.
Collaborating and communicating with local public health practitioners. Emergency medicine workflow can impact data collection, which in turn impacts the syndromic surveillance process. Clinicians can contact CDC’s NSSP at nssp@cdc.gov to connect with public health practitioners in their area.
Ultimately, the information related to a patient’s disability status documented by emergency department clinicians and staff on EHRs is critical. This information provides data to help emergency medicine and public health practitioners identify gaps in meeting the needs of the disability community. These data are essential for helping to ensure people with disabilities are included in response to public health emergencies.
Funding acknowledgment: This article was supported by the Centers for Disease Control and Prevention of the US Department of Health and Human Services (HHS) as part of a financial assistance award totaling $650,000 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, CDC/HHS or the US Government.
U.S. Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities. Disability and Health Overview. 2020. Source
The Lancet Public Health. Disability—a neglected issue in public health. The Lancet Public Health, 2021;6(6):e346. Source
Swenor BK. Including disability in all health equity efforts: an urgent call to action. The Lancet Public Health. 2021;6(6):e359-e360. Source
U.S. Centers for Disease Control and Prevention. Emergency Preparedness and Disability Inclusion. 2024. Source
Krahn GL, Walker DK, Correa-De-Araujo R. Persons with disabilities as an unrecognized health disparity population. AJPH. 2015; 105:S198-S206. Source
Pérez-Stable EJ, Valdez, RO. Announcement of decision to designate people with disabilities as a population with health disparities. 2023. Source
National Council on Disability. 2021 Progress report: the impact of COVID-19 on people with disabilities. 2021. Source
National Council on Disability. The impacts of extreme weather events on people with disabilities. 2023. Source
National Council on Disability. Preserving our freedom ending institutionalization of people with disabilities during and after disasters. 2019. Source
Disability Equity Collaborative. Documenting Disability Status in Electronic Health Records. Source
Kaundinya T. The need for disability documentation in the electronic health record. Health Affairs Forefront. 2022. Source
COMMENTARY
Data Routinely Captured in ED EMRs Can Support People With Disabilities During Public Health Emergencies
DISCLOSURES
| April 07, 2025Editorial Collaboration
&
People with disabilities have a wide range of needs.
A person with a disability is someone with a condition of the body or mind that makes it more difficult for them to do certain activities and interact with the world around them.[1] Domains of disability can include seeing, hearing, mobility, cognition, or other functions of daily living. People with disabilities are part of every community.[1] Therefore, it is important that this demographic group is represented across all public health data collection efforts.[2,3]
Navigating transportation, communications, or the essential need for supports can present unique challenges for people with disabilities, potentially making emergencies, such as pandemics and natural disasters, especially dangerous.[4] People with disabilities are also more likely to have health conditions such as diabetes or depression,[5,6] further increasing their risk of negative impacts from disasters. As a result, people with disabilities are more likely to get sick, be injured, die, or be placed unnecessarily into long-term care facilities during or after emergencies compared to people without disabilities.[7-9]
Accurate health data are essential to ensure that people with disabilities receive the care, support, and resources they need during public health emergencies.
However, it is difficult to track and understand health disparities in people with disabilities because data systems do not comprehensively include disability as a demographic. Without timely identification, people with disabilities may be inadvertently excluded from public health preparedness and response activities. Healthcare providers can play an important role in better serving people with disabilities by routinely documenting disability status and type within medical records during healthcare encounters, such as emergency department visits. In this way, healthcare providers can support people with disabilities during public health emergency responses in the future. Healthcare systems can also support people with disabilities during emergency responses by giving healthcare providers the resources and time needed to accurately record disability information during medical encounters.
Syndromic surveillance tracks symptoms of patients in emergency departments, in near real-time, to help public health professionals and clinicians understand the impact of public health emergencies on communities.
The CDC-supported National Syndromic Surveillance Program (NSSP) is one system that public health professionals use to monitor public health emergencies. As of 2024, 80% of US emergency departments share electronic health data with CDC's NSSP, often within 24 hours.
The data that emergency departments provide are routinely collected by emergency clinicians and emergency department staff during healthcare visits, such as clinical diagnoses and free-text fields (eg, reason for visit). Public health professionals use these data to monitor health trends before, during, and after emergencies, in near real-time. For example, emergency department data from NSSP can be used to detect, understand, and monitor health events such as unusual levels of injuries or emerging infectious diseases.
Through NSSP, electronic health data from emergency department visits provide public health professionals with timely information to make decisions about interventions during an emergency and potentially reduce surge strain on the healthcare system.
However, historically there has been no way to identify people with disabilities as part of NSSP’s efforts to monitor emergency department data for public health emergencies or outbreaks. This constraint has limited the opportunities to provide timely information on how outbreaks and emergencies impact people with disabilities.
Information related to disability that emergency department clinicians and staff routinely document at the point of care can inform emergency response, resource allocation, and public health interventions.
Through a collaborative project, the CDC, Association of State and Territorial Health Officials, and Thought Bridge LLC worked with a scientific panel to create definitions to identify emergency department visits by people with disabilities using data currently included in NSSP. Panel members included data experts, people with disabilities, clinicians, health agencies, and epidemiologists. These new definitions contain lists of clinical diagnoses and free text related to disability organized by domain of disability — such as intellectual and developmental, hearing, vision, or mobility — that may be included in electronic health records (EHRs). While diagnostic codes do not map directly to functional limitations, it is likely that certain conditions can be reasonably expected to produce functional limitations (eg, someone with muscular dystrophy could reasonably be categorized as having a mobility disability).
Disability definition domains with examples of clinical diagnosis codes and free-text keywords
These new definitions can be used to monitor the health and well-being of people with disabilities during public health emergencies. Health departments can examine monitored outcomes, such as injury or infectious disease, by disability status and type to inform emergency response and share insights back with emergency departments to inform clinical practice.
Information related to disability that emergency department clinicians and staff routinely document on EHRs can help public health and healthcare personnel make informed decisions. This information improves national, state, and local capacity to respond to, detect, understand, and monitor health events among people with disabilities during emergencies.
While this is a step forward, there is much more to be done.
Ideally, clinicians and staff would have the infrastructure and tools in place to routinely ask patients about their disability status[10] and document this information consistently on EHRs,[11] similar to other demographics such as age, sex, or race and ethnicity. The new definitions rely on clinical diagnoses and chief complaints routinely documented on EHRs and will not identify all emergency visits by people with disabilities. Visits by people with lower support needs or non-apparent disabilities may be more likely missed. However, until disability is collected as a demographic at the point of care, diagnostic codes and free text captured on EHRs are sometimes the only way to identify people with disabilities within data systems.
Despite limitations, these new disability definitions can be used to identify important trends and serve as a signal of group variation for key outcomes of interest. The definitions can help serve as a stopgap to identify people with disabilities within NSSP while healthcare providers and public health professionals work collectively to address systemic issues related to collecting disability as a demographic at the point of care.
Emergency department clinicians and staff can help support people with disabilities during public health emergencies by:
Ultimately, the information related to a patient’s disability status documented by emergency department clinicians and staff on EHRs is critical. This information provides data to help emergency medicine and public health practitioners identify gaps in meeting the needs of the disability community. These data are essential for helping to ensure people with disabilities are included in response to public health emergencies.
Funding acknowledgment: This article was supported by the Centers for Disease Control and Prevention of the US Department of Health and Human Services (HHS) as part of a financial assistance award totaling $650,000 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, CDC/HHS or the US Government.
Resources:
Public Information from the CDC and Medscape
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