Data Element

Comment

Comment

Agree and highly support the addition of this new data element. This supports patient centric care and ensures patient autonomy. For example, if a patient prefers holistic, non-medicine treatment interventions, the care team can proactively create a care plan to ensure patient compliance.

NCPDP Comment

NCPDP recommends the use of RxNorm for names of medications. This is being utilized by the NCPDP/HL7 Pharmacist eCare Plan and are applicable in CCDA and FHIR R4.

PACIO Project Comments on Treatment Intervention Preference

  • Data Class: Goals (Draft V4) 
  • Data Element: Care Experience Preference & Treatment Intervention Preference (Draft V4) 
  • Recommendation: Include Treatment Intervention Preference and Care Experience Preference as data elements under the Goals data class in USCDI V4. 
  • 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 believes the data elements Care Experience Preferences, Treatment Preferences, End of Life Orders and Durable Medical Power of Attorney included together provide the most essential information to give a holistic view of the individual’s wishes, necessary to inform care. Specifically, the identification of those goals, preferences and priorities authored by the individual themselves, in this use case as a result of memorialized advance healthcare decisions, that are related to Care Experience Preferences as well as those that are related to Treatment Intervention Preferences are extremely valuable across a healthcare system that is moving to true person-centered care. The stated preferences for Care Experience* allow the communication of decisions that are values or culture or religion-based to inform non-emergent care delivery for all those non-emergency moments, days, weeks, months, and years that are important to the person, including conditions of the care environment. These stated goals, preferences, and priorities represent quality of life priorities. The stated preferences for Treatment Interventions** allow the communication of decisions that may again be values or culture or religion-based, or be based on the person's life experience, to inform urgent, in-the-moment treatment decisions that must be made by clinicians when time is of the essence. Consideration for the person being treated must be taken into account. These decisions are more closely related to their quality of care priorities. Placing both under the GOALS data category removes them from an "advance healthcare decision" context to a certain extent, yet we see the value of accommodating ALL goals, preferences, and priorities without constraining the information source as ADI. What we seek to ensure is available in USCDI is the vehicle to make available to treating medical teams any/all decisions that the person has communicated in writing or verbally to a clinician about their personal views of what makes a good quality of life for them, what is important to them as they receive care, and what preferences they have for treatment interventions in an urgent situation.  All of this is done so as to empower people in their own care, reduce the cost of healthcare delivery related to unwanted treatments and over-treatment, and create a clear path forward to a healthcare delivery system that is informed by the person receiving care. 
    • Treatment Intervention Preference: Person's goals, preferences, and priorities for care and treatment in case that person is unable to make medical decisions because of a serious illness or injury.  Examples include but are not limited to preferences regarding cardiopulmonary resuscitation, endotracheal intubation, and tube feeding. 
    • Care Experience Preference: Person's goals, preferences, and priorities for overall experiences during their care and treatment. Examples include but are not limited to honoring religious beliefs, and conditions of the care environment. 

PACIO Project Advance Directive Observation Recommendation

  • Data Class: Advance Directives (Level 2) 

  • Data Element: Advance Directive Observation (Level 2) 

  • Recommendation: Include “Advance Directives” data class and the “Advance Directive Observation” data element under this class in USCDI V4.    

  • 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 believes that the Advance Directive Data Class provides context to the information exchanged and strongly recommend the “Advance Directives” data class be included in USCDI V4 along with the “Advance Directive Observation” data element. The Advance Directive observation is a critical component of the advance healthcare decision-making process; it is part of the clinical workflow that enables "confirmation" that what is wanted by the person has been validated by a clinician as being authentic for that person, which begins the workflow to activate those decisions into the treatment or care plan. Whether the clinician views a document or listens to a verbal instruction from the patient is what is intended by this "observation", it is from this "confirmation" step as a result of the observation that an instruction or prohibition of a treatment is verified that orders and actions with the treatment or care plan are initiated. Without the observation component, the document's instructions cannot be acted upon.  Even a portable medical order may require a clinical observation in certain jurisdictions or organizations to initiate the process for an episode-specific order to be created, which would mirror the PMO's content(s). 

PACIO Comments on Advance Directive Observation

Update “Advance Directive Observation” Data Element to USCDI Level 2: The current clinician-authored data element of “Advance Directive Observation” is critical to ensuring clinicians can record and share information about available patient-documented goals, preferences and priorities for treatments and interventions regarding future medical care that should be considered. This data element is routinely captured in the context of a Patient Summary or Encounter Summary authored by a clinician or assembled by clinician’s EMR system. This observation is recorded when a clinician verifies the presence of a patient’s advance directive information or confirms the patient has medical orders for life-sustaining treatments and documents reviewing this information.

The PACIO Community strongly recommends the “Advance Directive Observation” data element be advanced to USCDI Level 2.

Advance Directive Observation – PACIO support for USCDI Level 2

PACIO supports advancing the Advanced Directive Observation data element to USCDI Level 2.

Established February 2019, the PACIO Project is a collaborative effort between industry, government, and other stakeholders, with the goal of establishing a framework for the development FHIR implementation guides to facilitate health information exchange. The PACIO community is open to all interested parties and currently includes over 50 individuals and organizations. On behalf of the PACIO Project leadership team, the PACIO Community voted 9/29/21 and unanimously supports the document and recommendations as posted 9/28/21 by Lisa R Nelson. PACIO members were involved in the creation of that document based on experiences in advance directive content adjudication and FHIR implementation guide development. 

Update Data Element to USCDI Level 2

The current practitioner-authored data element of “Advance Directive Observation” is critical to ensuring clinicians can record and share information about available patient-documented goals, preferences and priorities for treatments and interventions regarding future medical care that may be considered under certain circumstances.  This data element is routinely captured in the context of a Patient Summary or Encounter Summary authored by a clinician or assembled by clinician’s EMR system.  This observation is recorded when a clinician verifies the presence of a patient’s advance directive information or confirms the patient has medical orders for life-sustaining treatments and documents reviewing this information. 

We strongly recommend the Advance Directive Observation data element be advanced to USCDI Level 2.

USCDIv3 ADI_Comments_20210927v3_0.pdf

Adv Directives Overall

Advance Directives are the original patient goals. They represent goals that are pervasive and used every day to help define the level of care a patient wants and to amplify their own voice in care. Whether the goals are for all extraordinary measures or comfort care, instructions and wishes, the advance directive is the original and ubiquitous personal care plan. It is encouraging to see the data elements defined in USCDIv2 L1 as being so consistent with efforts in the industry, and current industry practice. PACIO, MITRE, HL7 efforts have consistently recommended the same elements. 

Adoption of Advance Directives should be considered in USCDI V2. 

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