Assessments of a health-related matter of interest, importance, or worry to a patient, patient’s authorized representative, or patient’s healthcare provider that could identify a need, problem, or condition.

Data Element
Disability Status
Description (*Please confirm or update this field for the new USCDI version*)

Assessment of a patient’s physical, cognitive, or psychiatric disabilities.

Examples include but are not limited to American Community Survey, Veterans RAND Health Survey, and Patient-Reported Outcomes Measurement Information System (PROMIS).

Applicable Vocabulary Standard(s)

Applicable Standards (*Please confirm or update this field for the new USCDI version*)
  • Logical Observation Identifiers Names and Codes (LOINC®)

View guidance on Applicable Vocabulary Standards and versioning.
Submitted By: Grace Cordovano / Enlightening Results
Data Element Information
Data Element Description Represents information or details about an individual's physical, cognitive, intellectual, or psychiatric disabilities.
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
ASTP Evaluation Details
Each submitted Data Element has been evaluated based on the following criteria. The overall Level classification is a composite of the maturity based on these individual criteria. This information can be used to identify areas that require additional work to raise the overall classification level and consideration for inclusion in future versions of USCDI
Criterion #1
Maturity - Current Standards		 Level 2 - Data element is represented by a terminology standard or SDO-balloted technical specification or implementation guide.
Criterion #2
Maturity - Current Use 		Level 0 - Data element is captured, stored, or accessed in limited settings such as a pilot or proof of concept demonstration.
Criterion #3
Maturity - Current Exchange		 Level 0 - Data element is electronically exchanged in limited environments, such as connectathons or pilots.
Criterion #4
Use Case(s) - Breadth of Applicability		 Level 1 - Use cases apply to several care settings or specialties.

Comment

Submitted by cmayo@med.umich.edu on

Disability Status

The American Community Survey is a US government standard instrument. I would suggest using it as the standardized value set, for this question.  This has the additional benefit of facilitating interoperability with census data. 

Note, the ACS were adopted in professional society developed (AAPM, ASTRO, CARO)  standardized ontology that combines SDOH with clinical and outcome measures. 

 

Charles Mayo

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