Data used to categorize individuals for identification, records matching, and other purposes.

Data Element
Accommodation
Description

Provides information or details regarding modifications, tools, technologies, and/or other supports needed in order to address any barriers to care that an individual living with a disability(ies) may need in order to improve their care and life with a diagnosis.
Submitted By: Grace Cordovano / Enlightening Results
Data Element Information
Data Element Description Provides information or details regarding modifications, tools, technologies, and/or other supports needed in order to address any barriers to care that an individual living with a disability(ies) may need in order to improve their care and life with a diagnosis.
Use Case Description(s)
Use Case Description Individuals living with disabilities face barriers to receiving proper medical care when their doctors and care teams are not aware of existing disabilities. Consequently, these barriers exacerbate health disparities and result in inferior care and poor outcomes. Appointments may need to be rescheduled, care may not be coordinated properly, breakdowns in communication and trust will also negatively impact patient care without carefully documenting disability status. If properly documented, an alert could notify appropriate care team members and staff to address any physical access barriers, arrange for interpreters, plan for various forms of communication and patient support tools.

Applications for disability benefits could be further automated and streamlined with the addition of this data element.

If we are going to improve the lives and care of individuals living with disabilities, we must prioritize capturing and sharing this data accordingly.
Estimate the breadth of applicability of the use case(s) for this data element Over 61 million (roughly 1 in 4) adults in the United States live with a disability. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html#:~:text=61%20million%20adults%20in%20the,is%20highest%20in%20the%20South.
Healthcare Aims
  • Improving patient experience of care (quality and/or satisfaction)
  • Improving the health of populations
  • Reducing the cost of care
  • Improving provider experience of care
Maturity of Use and Technical Specifications for Data Element
Applicable Standard(s) N/A
Additional Specifications http://hl7.org/fhir/us/ecr/2021Jan/StructureDefinition-disability-status.html
Current Use Not currently captured or accessed with an organization
Extent of exchange N/A
Potential Challenges
Restrictions on Standardization (e.g. proprietary code) Unknown
Restrictions on Use (e.g. licensing, user fees) Unknown
Privacy and Security Concerns Unknown
Estimate of Overall Burden Unknown

Comment

Submitted by toni233nyc@gmail.com on

Advancement of Accommodation Data Element

As members of the Strategic Team of the Hearing Loss Association of America’s Communication Access in Health Care program—and as individuals with profound hearing loss—we strongly support advancing the Accommodation data element from Level 0 to Level 2.

Failure to document the accommodations a patient requires to communicate effectively with their health care team jeopardizes the health and safety of the patient, compromises the provider’s ability to deliver the best care, and places the health care facility in an ethically and legally vulnerable position. Without proper documentation, the burden of ensuring effective communication falls unfairly on the patient.

Key barriers to communication access in medical facilities include:

  • A lack of awareness that more than 50 million Americans struggle to hear health information clearly.
  • Limited understanding among providers of the availability and benefits of appropriate aids and services.
  • The absence of systemic processes to ensure accommodations are implemented consistently.

We have personally experienced the physical and psychological ramifications that occur when we are unable to communicate with providers and staff, particularly in urgent situations. Through our advocacy work, we are also in contact with hundreds of others who share this tenuous position when seeking safe and equitable medical treatment.

Rationale for advancing the Accommodation data element:

  • Enables facilities to plan for the full range of accommodations patients may require.
  • Reduces barriers faced by patients with disabilities when their accommodation needs are not identified or met.
  • Supports compliance with legal mandates requiring reasonable accommodations.

Advancing the Accommodation data element is a critical first step toward removing these barriers and ensuring that all patients receive the safest, most equitable, and highest-quality care.

Toni Iacolucci & Peggy Ellertsen, Communication Access in Health Care program, Hearing Loss Association of America

 

 

 

 

 

 

Submitted by nsnyder on

Adding Accommodations as a New Data Element

Comments submitted by: Barbara Kelley, Executive Director, Hearing Loss Association of America

Accommodations are distinct from disability status and are critical for delivering person-centered care. Capturing this information in EHRs would:

  • Improve care coordination, especially during transitions between settings.
  • Reduce medical errors and enhance safety for individuals requiring specific supports.
  • Empower providers to meet legal and ethical obligations under the ADA and Section 504.

Hearing loss is a compelling example of why accommodations data is essential. For example, 

  • More than 50 million Americans have some degree of hearing loss. That’s about 1 in 7 people in the U.S. (NIDCD and U.S. Census)
  • Hearing loss is the 3rd most common chronic physical condition in the U.S., twice as prevalent as diabetes or cancer. (CDC)
  • Hearing loss is associated with other common health issues such as diabetes and heart disease. (Healthy Hearing)
  • Hearing loss is on the rise and is expected to affect 2.5 billion people worldwide by 2050. (WHO)
  • 12% of all U.S. workers report hearing difficulty. (CDC)
  • 20% of noise-exposed workers have a material hearing loss that affects daily activities. (CDC)
  • 13% of noise-exposed workers have hearing loss in both ears. (CDC)

These individuals may require accommodations such as assistive listening devices, captioning services, or communication support. Most people with hearing loss do not use sign language, so communication access beyond that is critical in a health care situation. Even a mild to moderate hearing loss can present barriers, especially hearing in noise. Without a standardized way to document these needs, care teams may miss critical information that affects communication, safety, and outcomes.

Submitted by jpatterson@mitre.org on

PACIO supports advancement of Accommodation

  • Recommendation: PACIO recommends advancement of the Accommodation data element from Level 0 to Level 2 in the Patient Demographics/Information data class.
  • Rationale: The PACIO Community* strongly supports the HITWG’s recommendation to advance the Accommodation data element from Level 0 to Level 2 in the Patient Demographics/Information data class. Accommodations are critical for ensuring that individuals with and without disabilities receive equitable, accessible, and patient-centered care. The Disability Status data element identifies the presence of a disability, which may be related to accommodation needs, the Accommodation data element provides actionable, individualized information about the specific support, modification, or technology needed to remove barriers to care and daily living. This includes physical adjustments, communication supports, and changes to a policy, practice or rule that should give a person equal access to facilities and services. Each accommodation enables providers to tailor services to each patient’s unique needs. Documenting the need for an accommodation is essential for compliance with federal laws such as the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act, all of which require healthcare providers to offer reasonable accommodations. Inclusion of this data element in EHRs facilitates proactive identification of needs, reduces risk of noncompliance, and supports more patient-centered care. Furthermore, advancing the Accommodation data element will address all needs identified in the Level 0 Communication Status data element, as the communication-based accommodation information is the primary means of supporting effective patient-provider interaction.
  • USCDI Level Criteria:
    • Current Standards: Level 2 – Accommodation data are represented by several terminology standards.
    • Current Use: Level 2 – Accommodation data are currently captured in multiple production EHRs from more than one developer. 
      • Organizations capturing Accommodation include Epic and Cerner as documented in a recent Joint Commission journal article1. Another Joint Commission Journal article2 specifically noted that Epic enables the documentation of needed accommodation, including communication support, mobility aid, and cognitive support. The article highlights frequent requests for assistive listening devices, large-print materials, decision-making supports, and mobility assistance.
    • Current Exchange: Level Undetermined
      • Most organizations that currently collect this information use custom-built data collection within their EHRs or EMRs. The primary focus of this collection is to support patients’ needs during their associated healthcare visits. Currently, there is no evidence to suggest that this information is being exchanged. 
    • Breadth of Applicability: Level 2 – Use cases for Accommodation data apply to most care settings.
      • Accommodation data are collected and used across a wide range of healthcare settings, as indicated in the Joint Commission journal article1 that reported on Accommodation information being collected across various hospitals and clinics.
  • Additional Note: The PACIO Community will end recommendations for the advancement of the Communication Status data element (Level 0) in favor of advancing the Accommodation data element, as the latter fully addresses the needs identified in the Communication Status data element, particularly the ability to record and exchange information about communication-based supports and technologies.
  • References:
  1. Morris, M. A., Sarmiento, C., & Eberle, K. (2024). Documentation of disability status and accommodation needs in the electronic health record: A qualitative study of health care organizations’ current practices. The Joint Commission Journal on Quality and Patient Safety, 50(1), 16–23. https://doi.org/10.1016/j.jcjq.2023.10.006 
  2. Buning, G. E., James, T. G., Richards, B., & McKee, M. M. (2024). Self-reported accommodation needs for patients with disabilities in primary care. The Joint Commission Journal on Quality and Patient Safety, 50(1), 59–65. https://doi.org/10.1016/j.jcjq.2023.10.012 
  • * The PACIO (Post-Acute Care Interoperability) Project, established February 2019, is a collaborative effort between industry, government, and other stakeholders, that aims to advance interoperable health information exchange between post-acute care (PAC) providers, patients, and other key stakeholders across health care. 

Submitted by bswenor on

Advancing the Accommodation Data Element to Level 2

As cofounders of the Disability Health Equity Research Network (DHERN), we provide our strongest support for the PACIO Community’s comments to advance the Accommodation data element from Level 0 to Level 2. 

The Disability Health Equity Research Network (DHERN) is a collaborative of over 1,000 researchers, policymakers, advocates, and communities working to advance the health equity of people with disabilities. Improving the collection of data to achieve that goal is a core component of our mission. 

As stated in PACIO’s comments, healthcare organizations are legally required under multiple federal laws to provide patients with disability accommodations to ensure equal access to healthcare services and programs. 

Healthcare organizations must comply with federal laws requiring the provision of accommodations to patients with disabilities. These laws are intended to ensure that people with disabilities have equal access to healthcare, and are essential for addressing the health disparities that people with disabilities face. 

However, legal standards alone are insufficient. 

Patients’ accommodation needs must be consistently documented in the electronic health record (EHR) to ensure equitable and accessible healthcare. Without this data, we cannot determine the impact of providing accommodations on health outcomes, are unable to determine where and when gaps in access are occurring, and are missing opportunities to create innovative models of healthcare delivery. 

The current lack of federal EHR accommodation data standards remain a significant barrier. Healthcare organizations consistently report that the absence of standardized approaches to capturing accommodation information hinders their ability to reliably provide disability accommodations. Establishing a standardized accommodation data element would support interoperability across systems, improve care delivery, and strengthen accountability for accessible healthcare.

Collecting accommodation data is critical to meeting the healthcare needs of people with disabilities.

Bonnielin Swenor, PhD, MPH, Co-Founder, Disability Health Research Network, Professor and Director, Johns Hopkins Disability Health Research Center

Scott Landes, PhD, Co-Founder, Disability Health Research Network, Professor, Sociology Department, Syracuse University

Submitted by Megan Morris on

Support Advancement of Accommodations data element

The Disability Equity Collaborative (DEC) is a national community committed to advancing inclusion and accessibility for people with disabilities across the healthcare system. DEC brings together healthcare leaders, clinicians, researchers, professional societies, policymakers, and disability advocates to foster collaboration and drive systemic change. One of its cornerstone initiatives is the Leaders Learning Community, the largest network of healthcare disability coordinators in the United States. This group serves as the nation’s most comprehensive source of current knowledge, sharing best practices and the latest developments in disability-accessible care within U.S. healthcare systems.

DEC offers its strongest support for the PACIO Community’s comments to advance the Accommodation data element from Level 0 to Level 2. As a part of the DEC, our community collaboratively developed the following definition of disability accommodations in healthcare: modifications, tools, technologies, and other supports that are provided to address barriers to care, ensuring that individuals with disabilities can access the healthcare services they need. Reasonable accommodations are tailored to meet the unique needs of each patient, promoting an inclusive and supportive healthcare environment.

As stated in PACIO’s comments, healthcare organizations are legally required under multiple federal laws to provide patients with disability accommodations to ensure equal access to healthcare services and programs. To comply with these mandates, accommodation needs must be consistently documented in the electronic health record (EHR). This requirement applies across all healthcare settings (breadth of applicability). At the state level, for example, New York recently enacted legislation requiring hospitals to document patients’ accommodation needs at admission, underscoring the urgency and importance of standardized data capture.

Through both our Learning Collaborative of more than 50 healthcare systems and ongoing research, we know that healthcare organizations are already documenting patients’ accommodation needs (current use). However, in the absence of a standardized data element, organizations are forced to create their own documentation processes, resulting in incompatible systems and fragmented data exchange. A lack of EHR standards is a cited barrier healthcare organizations report to consistently providing their patients disability accommodations. Standardizing the Accommodation data element will ensure interoperability, improve care delivery, and strengthen accountability for providing accessible care to the 27% of US adults with a disability.

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