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 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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