Assessments of a health-related matter of interest, importance, or worry to a patient, patient’s family, 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®) version 2.77
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 nedragarrett_CDC on

CDC's Consolidated Comment for USCDI v4

 We recommend moving the Disability Status data element from the Health Status data class to the Patient Demographics data class; identifying as a person with a disability does not necessarily have any bearing on how healthy a person is considered to be or the status of one’s health. Disability status is important to assess on a routine basis as it can be chronic or newly-evident due to illness or injury, and up to 1 in 4 adults report functional disability. Disability status places individuals as part of a group and as members of a minority sometimes subjected to marginalization, prejudice or discrimination. The federal consideration of disability data as demographic has precedent.  For example, the social security administration categorizes its research, statistics, and policy analyses by demographics, including by disability status.   In addition, the data collection standards established by the ACA include disability alongside many variables already included in the Patient Demographics data class, such as race, ethnicity, and sex.  Recognizing disability as a demographic variable can help public health professionals to specifically tailor health interventions with the goal of helping people with disabilities achieve health equity.  Collecting and transmitting data on disability in a standardized way alongside other demographic factors is vital to recognition of disability as a key component of identity and allows analysis of outcomes and conditions in an intersectional way, incorporating race/ethnicity, age, sex, and disability together for a more comprehensive understanding of patient demographics.   

Submitted by claricelmiller… on

AOTA's Comments on Disability Status

The American Occupational Therapy Association (AOTA) supports more consistent collection of disability status. AOTA supports its inclusion in the Health Status class as disability status may fluctuate between and during episodes of care.  Disability status is captured consistently by occupational therapy practitioners through assessment and intervention. AOTA encourages USCDI to consider how data from occupational therapy practitioners can be utilized in this data class. 

We encourage USCDI to also consider how this data can be patient reported to capture the individual’s interpretation of their disability status and identify inconsistencies in reporting. Utilizing self-reported and clinician reported data will provide a more comprehensive picture of the patient's disability status.  

2022 USCID Final Comments_1.pdf

Submitted by RUy on

NACHC - Health Status – Disability Status

NACHC supports the comments of CDC, Ann Phillips/IMO and Charles Mayo/University of Michigan.

 

NACHC is supportive of the concept of disability status; however, it is not likely to support interoperability to solely create a terminology binding to support the concept. Because the concepts in the draft version generally represent non-semantically equivalent types of disability status and observations about these conditions, we believe that creating a class for this concept will likely create larger transitions of care documents without being able to be processed by receiving systems.

 

This approach creates liability for providers who at best can use this data as free text in this case and contributes to data overload and burnout. We strongly recommend providing either specific category of functional status with equivalent semantics and clear terminology bindings.

 

Please see attached NACHC letter, documenting this comment and other feedback for v3 accepted draft data elements.

2022-04-30 NACHC USCDIv3 Letter of Support_2.pdf

Submitted by aphillips@imoh… on

Level 2 Data Element: Disability Status

The submission for this data element cites the FHIR Implementation Guide for Electronic Case Reporting (eCR), Resource Profile: Disability Status (v2.0.0: STU 2 FHIR R4)  which references a value set for Disability Status OID: 2.16.840.1.113762.1.4.1099.49.

IMO has reservations regarding the technical specification for the Level 2 data element for Disability Status in the Functioning Data Class. The submission does not meet the implementation requirements for a new Level 2 Data Element for production implementation or exchange between systems.

Of particular concern is the Disability Status value set developed by the Assistant Secretary for Planning and Evaluation (ASPE) in 2011. This value set consists of 6 LOINC codes to define disability for the Disability Status use case. This value set is quite limited in scope and does not serve to capture the range of variables for disability. IMO would encourage the ONC to coordinate with ASPE to develop a more inclusive value set that better aligns with the needs of the disability community.

 

 

 

Submitted by nedragarrett_CDC on

CDC's Consolidated Comment

  • Description:

Patient-centered disability questionnaire for identification of patients with disabilities and mitigate disparities in health care. It addresses patient vision, hearing, communication, memory/concentration, physical ability and need any additional assistance or accommodations during a visit to healthcare provider.

 

  • Classification:

We recommend moving the Disability Status data element from the Health Status data class to the Patient Demographics data class. Disability status is important to assess on a routine basis as it can be chronic or newly-evident due to illness or injury, and 1 in 4 adults report functional disability. Disability status is associated with multiple health disparities and is poorly understood due to lack of consistent patient data. Disability can be both a medical outcome and a social construct, and adding this self-reporting element to the Patient Demographics class will allow for better measurements of the social determinants of health and addressing health equity for this demographic group.

 

  • Estimated number of stakeholders capturing, accessing using or exchanging:

Over 61 million (roughly 1 in 4) adults in the United States live with a disability.

  • 13.7 percent of people with a disability have a mobility disability with serious difficulty walking or climbing stairs.
  • 10.8 percent of people with a disability have a cognition disability with serious difficulty concentrating, remembering or making decisions.
  • 6.8 percent of people with a disability have an independent living disability with difficulty doing errands alone.
  • 5.9 percent of people with a disability are deaf or have serious difficulty hearing
  • 4.6 percent of people with a disability have a vision disability with blindness or serious difficulty seeing even when wearing glasses 
  • 3.6 percent of people with a disability have a self-care disability with difficulty dressing or bathing. 

https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html#:~:text=61%20million%20adults%20in%20the,is%20highest%20in%20the%20South

 

  • Applicable Standard(s):

Logical Observation Identifiers Names and Codes, LOINC, 98067-2, Patient-centered disability questionnaire.  https://loinc.org/98067-2/

PHVS_YesNoUnknownNoAnswer_CDC - https://phinvads.cdc.gov/vads/ViewValueSet.action?id=F5D34BBC-617F-DD11-B38D-00188B398520

Additional Specifications:

http://hl7.org/fhir/us/ecr/2021Jan/StructureDefinition-disability-status.html

ASPE. HHS Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status. October 2011. https://aspe.hhs.gov/reports/hhs-implementation-guidance-data-collection-standards-race-ethnicity-sex-primary-language-disability-0

 

  • Current Use:

CMS- Improving Access to Care for People with Disabilities, CDC- Disability and Health Promotion, HL7 - FHIR

 

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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