Health Status Assessments

PACIO Comments on Patient Communication Status

• Data Class: Health Status Assessments
• Data Element: Patient Communication Status (currently Level 0)
• Recommendation: Advance Patient Communication Status to USCDI V5 and move it to the Patient Demographics/Information Data Category.
• 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 applauds the addition of Patient Communication Status to USCDI as a Level 0 data element in draft V5.
• Communication is the active process of exchanging information and ideas. Communication involves both understanding and expression. Forms of expression may include personalized movements, gestures, objects, vocalizations, verbalizations, signs, pictures, symbols, printed words, and output from augmentative and alternative (AAC) devices. When an individual communicates effectively, they are able to express needs, wants, feelings, and preferences that others can understand and can accurately receive messages from others. A person’s ability to comprehend and express information plays a critical role in medical decision making, sharing wishes with caregivers and practitioners, navigating the health care system, patient safety and satisfaction, decreasing diagnostic errors, and shaping the journeys and interactions when transitioning between different health care institutions where one relies heavily on communication skills. Many factors can impact comprehension, including hearing, cognitive and mental status, and functional status of body structures.
• After further examination of this data element, we strongly recommend that a patient’s communication status be included with demographic information. Because this information impacts every encounter within a medical system and how they interact with providers and organizations, and because the underlying causes of an impaired status may be captured under Functional Status and Mental/Cognitive Status, we believe the communication status, unimpaired or impaired and requiring accommodations of any type should be captured with other identifying information.
• Some of this information, specifically spoken language, is already captured in US Core under the Patient Profile with all other demographic information. We believe that this information should be considered as complimentary and captured under demographics using the Communication Status data element.

PACIO Comments on Duplicate Data Elements

• Data Class: Health Status Assessments
• Data Element: Self-care, Mobility, Domestic Life/ Instrumental Activities of Daily Living (IADLs), HHS Disability Status - Activities of Daily Living, HHS Disability Status – Cognitive, HHS Disability Status – Hearing, HHS Disability Status – Independence, HHS Disability Status – Mobility, HHS Disability Status – Vision, Mental Status Evaluation, Mental Health Status (Level 0).
• Recommendation: Remove the Self-care, Mobility, Domestic Life/ Instrumental Activities of Daily Living (IADLs), HHS Disability Status - Activities of Daily Living, HHS Disability Status – Cognitive, HHS Disability Status – Hearing, HHS Disability Status – Independence, HHS Disability Status – Mobility, HHS Disability Status – Vision, Mental Status Evaluation data elements under the Health Status Assessments Data Class in Level 0 and do not consider these data element for inclusion for future versions of USCDI.
• 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. Conceptually, including these data elements in the USCDI is duplicative, since Functional Status, Mental/Cognitive, and Disability Status were added to USCDI V3 and V4. The data elements of Functional Status and Mental/Cognitive Status are more broadly applicable than these Level 0 data elements, allowing greater flexibility while still enabling exchange of these important clinical concepts. We believe Disability should be captured under patient demographics and have submitted a separate comment reflecting this. We believe guidance around the specific information or content that would satisfy the requirements for exchanging these data elements would be more appropriate to include in the US Core IG and the other standards-based implementation guides.

PACIO Comments on Disability Status

• Data Class: Health Status Assessments 
• Data Elements: Disability Status
• 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.

Comment

Recommend adding Family History as a data element in either the Health Status Assessment data class or another data class if better suited. Family History is important to capture in order to develop an accurate treatment plan and best care of the patient. Often times, Family History populates in the Problems data class which can cause a clinician to overlook this data element since the clinician expects Family History in a different data class.

NCQA Comment on Smoking Status: for USCDI v5

1. Smoking Status:

NCQA recommends updating the element name to Tobacco-Use Assessment to encompass assessment of broader tobacco products beyond smoked products/cigarettes; This aligns with the FDA definition of Tobacco products. We also recommend adding to the examples of items that fall under this element quit date and smoking duration, in addition to the examples of pack-years and current use already included. We recommend updating the terminology to include LOINC in addition to SNOMED. Smoking status, tobacco-use status, and smoking behavior details (i.e., pack-years) are well defined by LOINC and/or SNOMED. Comprehensive assessment of tobacco-use and smoking behaviors remain a public health priority and are essential to appropriately providing cessation intervention. These data elements are also crucial for understanding a patient’s eligibility for lung cancer screenings, a screening that is recommended by the U.S. Preventive Services Task Force and that remains underutilized despite its proven effectiveness. NCQA is currently developing measures to incentivize routine tobacco use assessments and appropriate lung cancer screening for those eligible based on smoking history.

PACIO Recommendations on Current Level 0 Data Elements

• Data Class: Health Status Assessments
• Data Element: Self-care, Mobility, Domestic Life/ Instrumental Activities of Daily Living (IADLs), HHS Disability Status - Activities of Daily Living, HHS Disability Status – Cognitive, HHS Disability Status – Hearing, HHS Disability Status – Independence, HHS Disability Status – Mobility, HHS Disability Status – Vision, Mental Status Evaluation, Mental Health Status (Level 0)
• Recommendation: Remove the Self-care, Mobility, Domestic Life/ Instrumental Activities of Daily Living (IADLs), HHS Disability Status - Activities of Daily Living, HHS Disability Status – Cognitive, HHS Disability Status – Hearing, HHS Disability Status – Independence, HHS Disability Status – Mobility, HHS Disability Status – Vision, Mental Status Evaluation data elements under the Health Status Assessments Data Class in Level 0 and do not consider these data element for inclusion for future versions of USCDI.
• 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. Conceptually, including these data elements in the USCDI is duplicative, since Functional Status, Mental/Cognitive Status, and Disability Status were added to USCDI V3 and V4. The data elements of Functional Status, Mental/Cognitive Status, and Disability Status are more broadly applicable than these Level 0 data elements, allowing greater flexibility while still enabling exchange of these important clinical concepts. We believe guidance around the specific information or content that would satisfy the requirements for exchanging these data elements would be more appropriate to include in the US Core IG and the other standards-based implementation guides.

PACIO Recommendations on Disability Status in V5

• Data Class: Health Status Assessments
• Data Elements: Disability Status
• 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.

CMS-CCSQ Support for Health Status/Assessments Expansion

CMS recommends that “Health Status/Assessments” should be expanded to include not only the specified assessment question, but to also include the responses/results of such assessments and that these responses and results be incorporated into the USCDI in alignment with the PACIO Project IGs. Information garnered via patient health assessments is critical for planning patient-centered care and should be exchanged between providers during transitions of care to support care coordination. CMS is also encouraging ONC to adopt the value sets developed by the PACIO project for the “Personal Functioning and Engagement” FHIR IG that incorporates Functional Status and Cognitive Status data elements into PACIO’s prior published IGs.

PACIO Project Recommends Creation of New Data Element

• Data Class: Health Status Assessments (V4 Draft) 

• Data Element: Patient Communication Status 

• Recommendation: Create data elements specifically for patient communication status under the USCDI class of Health Status Assessments in a future version of the USCDI. 

• 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 strongly recommends creating an element specifically for patient communication status under the USCDI category of Health Status Assessments. The most current version of USCDI does not include any data elements addressing communication. Communication is the active process of exchanging information and ideas. Communication involves both understanding and expression. Forms of expression may include personalized movements, gestures, objects, vocalizations, verbalizations, signs, pictures, symbols, printed words, and output from augmentative and alternative (AAC) devices (2).  When an individual communicates effectively, they are able to express needs, wants, feelings, and preferences that others can understand and can accurately receive messages from others. A person’s ability to comprehend and express information plays a critical role in medical decision making, sharing wishes with caregivers and practitioners, navigating the health care system, patient safety and satisfaction, decrease diagnostic errors, and shapes the journey and interactions when traveling between different health care institutions where one relies heavily on patient’s communication skills (4). The PACIO community encourages the ONC/USCDI to incorporate communication as a data element under the proposed USCDI V4 data class of Health Status Assessments.  Assessment or screening the presence of communication deficits and need for special accommodations should be considered under this data element. Effective communication not only improves a patient’s quality of life and independence but improves health outcomes, reduces health care costs, and eases administrative burden. Communication can take many forms. Examples include but are not limited to the person’s ability to understand spoken or written language, person’s ability to express needs, wants and wishes through spoken or written language, person’s ability to produce intelligible speech, use of sign language, use of Augmentative and Alternative Communication (AAC), use of communication devices, or strategies to be used by the communication partner. 

Glossary of Terms 

• Receptive Language Skills: Receptive language skills are a person’s ability to understand spoken and written language, signs, or gestures. The PACIO community encourages the data element to include assessment or screening and what strategies to be used to improve a person’s ability to understand the given content. 

• Expressive Language Skills: Expressive language skills are a person’s ability to express needs, wants, feelings and wishes through spoken and written language, signs, and gestures. The PACIO community encourages the data element to include assessment or screening and what methods/strategies to be used to improve a person’s ability to express themselves. 

• Augmentative Alternate Communication (AAC): AAC means all of the ways that someone communicates besides talking. People of all ages can use AAC if they have trouble with speech or language skills. Augmentative means to add to someone’s speech. Alternative means to be used instead of speech. Some people use AAC throughout their life. Others may use AAC only for a short time, like when they have surgery and can’t talk. There are many types of AAC. No-tech and low-tech options include things like gestures and facial expressions, writing, drawing, spelling words by pointing to letters, and pointing to photos, pictures, or written words. High-tech options include things like using an app on an iPad or tablet to communicate and using a computer with a “voice," sometimes called a speech-generating device (1).  The PACIO community encourages the data element to include assessment or screening and what methods/strategies to be used to incorporate AAC. 

• Speech: Speech and Language are different. A person can have problems with one or both. Speech is how we say sounds and words, which includes articulation, voice, and fluency. A person might have slurred speech limiting their ability to communicate. The PACIO community encourages the data element to include assessment or screening for speech deficits and to identify what methods/strategies to be used to improve a person’s ability to express themselves. 

• Sign Language: Sign Language consists of linguistically specified handshapes, locations, movements, palm orientations, and non-manual markers to convey information (3). The PACIO community encourages the data element to include assessment/screening and methods to incorporate the use of sign language for communication.  

We appreciate the opportunity to comment on USDCI V.4 and respectfully request the addition of communication measures to accurately capture the full functional status of patients If you have further questions, please feel free to contact the PACIO community by emailing info@PACIO.org. 

• References: 
  • American Speech-Language-Hearing Association, ASHA Practice Portal 
  • Beukelman, D. & Mirenda, P. (2013). Augmentative and Alternative Communication: Supporting Children & Adults with Complex Communication Needs 4th Edition. Baltimore: Paul H. Brookes Publishing. 
  • Valli, C., Lucas, C., Mulrooney, K. J., & Rankin, M. N. P. (2011). Linguistics of American Sign Language: An introduction (5th ed.). Washington, DC: Gallaudet University Press. 
  • Schnipper, J., Fitall, E, Hall, K., Gale, B. (2021) Approach to Improving Patient Safety: Communication