Data Element

Comment

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.

 

 

 

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

 

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

Log in or register to post comments