Health Status Assessments

PACIO Comments on Disability Status

• The PACIO Community requests ONC clarify what is meant by “Disability Status” and how it relates to the separate data element of “Functional Status.” The existing definition does not describe the current conceptualization of disability. Recent literature suggests that functioning and disability is a complex interaction between a person, their health condition, personal factors (e.g. age lifestyle), and the environment. This concept is delineated in the International Classification of Functioning, Disability and Health (ICF) (https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health). As a classification, ICF systematically groups different domains for a person in a given health condition (e.g., what a person with a disease or disorder does do or can do). Functioning is an umbrella term encompassing all body functions, activities and participation; similarly, disability serves as an umbrella term for impairments, activity limitations or participation restrictions. ICF also lists environmental factors that interact with all these constructs. In this way, it enables the user to record useful profiles of individuals’ functioning, disability and health in various domains. The association between the person and the contextual factors, defined as personal and environmental factors in the ICF, provides a clearer understanding of a person’s functioning and disability. Disability status considers the negative aspect of the interrelationship. For example, an individual with a health condition could be considered disabled in one environment (structural barriers exist in the community restricting a person in a wheelchair from moving outside one’s home) but not in another (accessible streets and housing allow a person in a wheelchair to go to work and community-based activities). The current definition of disability status assumes that only an assessment of physical, cognitive, intellectual, and psychiatric disabilities is required. Disability could be interpreted as part of Functional Status, whereby functioning indicates capability in a given area and poor functioning could be described as disability in that area (e.g., capability to ambulate vs. inability to ambulate). Disability often manifests on a continuum and the level of disability may depend upon certain environmental variables, such as access to assistive devices or technologies. In addition, disability may be permanent or temporary (e.g., functional abilities may decline after a stroke or a surgical procedure, but then improve with time and therapeutic interventions). If for the purposes of USCDI, ONC intends for Disability Status to represent a more binary concept of permanently disabled or not disabled, as determined by qualification for federal disability benefits, for example, the PACIO Community requests more explicit guidance to this effect.
  • The PACIO Community recommends that disability status be defined as an assessment (self, familial or practitioner assessment) that measures the relationship between a person, their health condition, personal factors, and the environment. Assessments can be identified that fit into the disability assessment category. Alternatively, the definition can be simplified to a designation of disability benefits awarded by a governmental or regulatory agency may be included.

CDC's comment on behalf of CSTE for USCDI v4

CSTE agrees with CDC's recommendation for this data element USCDI v4. 

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.   

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

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

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

Comments on Disability status measures (hearing loss)

Attached please find comments from Barbara Kelly, Executive Director of the Hearing Loss Association of America, regarding the proposed Disability Status measures in UNCDI v3 (hearing loss).

Thank you.

Office of National Coordinator_fromBK.pdf