Health Status Assessments

Recommend Moving Disability Status to Patient Demographics

• Recommendation: Recommend moving the Disability Status data element to the Patient Demographics/Information data class.
• Rationale: The PACIO Project Community* recognizes and appreciates the significant work undertaken by the HHS Data Council in developing the Disability Status data collection standards. We understand the historical context and the deliberate efforts made by the Council and its dedicated workgroup to ensure that this data accurately captures necessary information, particularly as it relates to demographic data collection. The Council’s approach, as outlined in the "U.S. Department of Health And Human Services Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status" clearly demonstrates that Disability Status is intended to be collected as part of demographic information, alongside race, ethnicity, and sex.
  • The PACIO Community’s ongoing concern is that Disability Status under USCDI continues to be classified under the Health Status Assessments data class, which does not reflect its primary purpose as a demographic identifier. Disability Status, like race, ethnicity, and sex, is a fundamental demographic characteristic and should be grouped accordingly to ensure consistency and clarity in data collection and use. Moving this data element to the Patient Demographics/Information data class would better align with the intent of the HHS Data Council and the standards described in the aforementioned guidance document.
  • Furthermore, collecting the patient asserted Disability Status as part of Health Status Assessments risks conflating disability with clinical health assessments, which may lead to misinterpretation or unintended consequences, such as influencing disability benefits or incorrectly classifying patients. Disability, as a demographic characteristic, does not inherently reflect a person’s health status, functional status, or cognitive status, which is typically captured under Health Status Assessments.
  • This recommendation is consistent with current practices in post-acute care (PAC) settings and aligns with CMS guidance, Inventory of Resources for Standardized Demographic and Language Data Collection. By classifying Disability Status within Patient Demographics/Information, we can more accurately capture and utilize this data for demographic analysis, support better clinical decision-making, and avoid conflating disability assertions with health assessments.
• Reference: The HHS Data Council serves as the principal, senior internal Departmental forum for coordinating HHS data collection and analysis activities. The Council’s workgroup leveraged extensive experience in collecting and analyzing demographic data to develop the Disability Status collection standard. U.S. Department of Health And Human Services Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status
• * The PACIO (Post-Acute Care Interoperability) Project, established February 2019, is a collaborative effort between industry, government, and other stakeholders, that aims to advance interoperable health information exchange between post-acute care (PAC) providers, patients, and other key stakeholders across health care.

PACIO recommends changing Disability Status to Disability

• Data Class: Health Status Assessments
• Data Element: Disability Status (Draft V6)
• Recommendation: Remove the Disability Status data element from the Health Status Assessments data class and instead add a new data element entitled Disability to the Patient Demographics/Information data class.
• Rationale: The PACIO Project Community* recommends removing the Disability Status data element from the Health Status Assessments data class and instead add a new data element entitled, Disability to the Patient Demographics/Information data class. This recommendation is endorsed by both CMS and CDC as described in previous USCDI comments and the PACIO Project Community supports their view that “identifying a person with a disability does not necessarily have a bearing on how healthy a person is” or the status of one’s health. As an example, given in a CMS comment for this data class, “a person’s need to use a mobility aid, like a wheelchair, does not convey any information about why they need that aid or provide any information about their health, only that they use a mobility aid and that they may need mobility accommodations. Information surrounding a disability could be captured under other existing data elements such as Functional Status or Mental/Cognitive Status. Collecting and transmitting data on disability, such as presence or need for additional support, in a standardized way is vital to recognition of disability as a key component” and a “more comprehensive understanding of patient demographics.
• Routinely collecting information under the notion of a disability as a status through a Health Status Assessment also opens the way for unintentional use of the data, namely in determining or altering a patient’s disability benefits. Using the data element in this way is at odds with routine clinical assessment of a disability, which is notionally captured as an absence of function or change in function under Functional Status or Cognitive Status. Because of the highly structured rules regarding disability, assessments of disability, and determination of disability, the routine collection of a disability assessment as described in Disability Status data element under Health Status Assessment data class may result in incorrect classification of the patient.
• This recommendation aligns with how data are currently collected in PAC settings and aligns with CMS recommendations. By being able to collect information about a person’s disability as a demographic, we will be able to better delineate and prevent conflating of disability, functional status, and cognitive status, ultimately supporting better clinical decision-making and patient care.
• * The PACIO (Post-Acute Care Interoperability) Project, established February 2019, is a collaborative effort between industry, government, and other stakeholders, with the goal of establishing a framework for the development of FHIR implementation guides to facilitate health information exchange.

CMS-CCSQ Recommend revising the Disability Status data element

Data Element: Disability Status (USCDI v5)

1. Recommendation: Remove the Disability Status data element from the Health Status Assessment data class and instead add a new data element entitled, “Disability” to the Patient Demographic data class.
2. Rationale: CMS believes that identifying a person with a disability does not necessarily hold bearing on the status of one’s health or how healthy an individual is. For example, a person’s need to use a mobility aid, such as a wheelchair, does not convey any information about why they need that aid or provide any information about their health—only that they use a mobility aid and that they may need mobility accommodations. Information surrounding a disability could be captured under other existing data elements such as Functional Status or Mental/Cognitive Status. Collecting and transmitting data on Disability Status, such as presence or need for accommodation, in a standardized way 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.

PACIO Recommendation V6 Disability Status Rename / Move

• Data Class: Health Status Assessments  (V5)
• Data Elements: Disability Status (V5)
• Recommendation: Remove the Disability Status data element from the Health Status data class and instead add a new data element entitled “Disability” to the patient demographic data class. 
• Rationale: The PACIO (Post-Acute Care Interoperability) Project, established February 2019, is a collaborative effort between industry, government, and other stakeholders, with the goal of establishing a framework for the development of FHIR implementation guides to facilitate health information exchange.  
• The PACIO Community supports previous CMS and CDC submissions which reflect their view that identifying a person with a disability does not necessarily have a bearing on how healthy a person is or the status of one’s health. For example, a person’s need to use a mobility aid, like a wheelchair, does not convey any information about why they need that aid or provide any information about their health, only that they use a mobility aid and that they may need mobility accommodations. Information surrounding a disability could be captured under other existing data elements such as Functional Status or Mental/Cognitive Status. 
• Collecting and transmitting data on disability, such as presence or need for accommodation, in a standardized way 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. 
• Routinely collecting information under the notion of Disability Status as a Health Status Assessment also opens the way for unintentional use of the data, namely in determining or altering a patient’s disability benefits. Using the data element in this way is at odds with routine clinical assessment of a disability, which is notionally captured as an absence of function or change in function under Functional Status or Cognitive Status. Because of the highly structured rules regarding disability, assessments of disability, and determination of disability, the routine collection of a disability assessment as described in Disability Status under Health Status Assessment may result in incorrect classification of the patient. 

Disability Status

Health Status – Disability Status

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. NACHC encourages ONC to support work on a list of preferred instruments and mappings that will assist organizations in normalizing these types of data and work with other agencies that could extending disability documentations into coded standards and workflows. 

Comments on Disability Status

Health Status – Disability Status

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. NACHC encourages ONC to support work on a list of preferred instruments and mappings that will assist organizations in normalizing these types of data.

CMS-CCSQ/CDC Joint Support for Disability Status for USCDI v5

CMS, along with the PACIO Project and CDC, also repeats the recommendation to move the Disability Status data element from the Health Status Assessments data class to the Patient Demographics/Information data class. The rationale being that identifying a person with a disability does not necessarily have any bearing on how healthy a person is or the status of one’s health.

CMS-CCSQ/CDC Joint USCDIv4 Priority: Disability Status

CDC and CMS recommend moving the current Disability Status data element from the Health Status Assessments data class to the Patient Demographics data class.

Federal consideration of disability data as demographic has precedent. For example, 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, and by extension disability can be used when using demographic factors for stratification for 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.

CMS may additionally recommend a disability assessment data element in version 5 to qualify the disability type (e.g. functional, cognitive, physical, etc.).

PACIO Project Recommends Change to Disability Status

• Data Class: Health Status Assessments (Draft V4) 

• Data Elements: Functional Status, Mental/Cognitive Status, Disability Status (Draft V4)  

• Recommendation: Remove the Disability Status data element from the Health Status data class and instead add a new data element entitled, “Disability” to the patient demographic data class.  

• Rationale: The PACIO (Post-Acute Care Interoperability) Project, established February 2019, is a collaborative effort between industry, government, and other stakeholders, with the goal of establishing a framework for the development of FHIR implementation guides to facilitate health information exchange. The PACIO Community supports CMS and CDC submission, which reflect their view that identifying a person with a disability does not necessarily have any bearing on how healthy a person is or the status of one’s health. However, 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. 

PACIO Project Recommends Value Set Adoption

• Data Class: Health Status Assessments (Draft V4) 

• Data Elements: Functional Status, Mental/Cognitive Status, Disability Status (Draft V4) 

• Recommendation: Adopt the value sets developed for the “Personal Functioning and Engagement” IG as part of the USCDI V3 updates to the U.S. Core IG to incorporate Functional Status and Cognitive Status data elements. 

• Rationale: The PACIO (Post-Acute Care Interoperability) Project, established February 2019, is a collaborative effort between industry, government, and other stakeholders, with the goal of establishing a framework for the development of FHIR implementation guides to facilitate health information exchange. Functional and Mental/Cognitive Status are important data classes that have widespread use in all healthcare settings and sharing the content of standardized PAC assessments (some of which are federally required) with non-PAC providers (e.g., hospitals, physicians) would improve the quality of care and facilitate care coordination during transitions of care. These instruments use a consistent framework mapped to HIT standards for functional status, contain administrative and clinical patient data, can be considered as individual data elements (mobility, pressure ulcer, transportation, social isolation, etc.) or a “questionnaire” of grouped data elements together (MDS, OASIS, IRFPAI, FASI etc.) The PACIO Community wishes to update the ONC/USCDI with current efforts relating to several of the data elements under the proposed USCDI V4 data class of Health Status (Health Concerns, Functional Status, Disability Status, and Mental/Cognitive Status). The PACIO Community recognized the value of creating data models (like Gravity’s SDOH) that allow for expansion across multiple domains. As a result, PACIO created a new FHIR Implementation Guide (IG), “Personal Functioning and Engagement,” which consolidates PACIO’s prior published IGs (STU1) “Cognitive Status” and “Functional Status”. The PACIO group also is incorporating data elements of communication, swallowing, and hearing to the “Personal Functioning and Engagement” IG currently under development. Currently, the Personal Functioning and Engagement IG data structures focus on observation/ assessment data. However, the IG could include future expansion using additional resources as the work matures. The concept of “Personal Functioning and Engagement” encompasses both an individual’s abilities (positive strengths) and disabilities (impairments) across all types of functioning. The PACIO Community examined and incorporated the International Classification of Functioning, Disability and Health (ICF) as a conceptual framework that underpins this new PACIO Personal Functioning and Engagement IG. PACIO’s current work focuses on ICF “Body Functions” including mental functions, sensory functions (including hearing), voice and speech functions, and ingestion functions (swallowing). Current PACIO focus for ICF “Activities and Participation” functions include Learning and Applying Knowledge, Communication, Mobility, and Self-care.