Data Element

Information from the submission form

Care Experience Preference
Advance directives information may contain a person’s preferences for their care experience based on cultural, religious or spiritual, and personal preferences. The individual states personal thoughts about something he or she feels is relevant to his or her care experience that may be pertinent when planning his or her care. They may indicate aspects of the care experience such as who they want to be present at the care setting from their circle of family and friends, how they want the environment to feel such as being in sunlight when possible or have music playing that creates a feeling or peace or happiness or having spiritual or religious articles close by, and how they want aspects of care delivery to occur such as baths rather than showers or making sure their feet are kept warm or preferring female care givers to male caregivers. The 2020 Interoperability Standards Advisory (ISA) includes the concept of “patient preference/consent” in the content and structure section. ( which is loosely related to both the data element of “care experience preference” and the data class of “patient instructions”.


Care Experience Preference- PACIO supports Level 2 advancement

The PACIO Project strongly supports advancement of the data element “Care Experience Preference” 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.

Advance “Care Experience Preference” to USCDI Level 2

The current data element of “Care Experience Preference” provides details on a person’s preferences for their care experience based on cultural, religious or spiritual, and personal preferences.  The need and maturity of this data element has been validated by the PACIO community. Over the past year multiple organizations have used both of these CDA and FHIR standards to share this important patient generated information.  In addition, the CDA guidance has been balloted twice within HL7, the FHIR IG is preparing to be balloted in January 2022.
  • There is a LOINC Code that represents this data element (81338-6 Patient Goals, preferences, and priorities for care experience) and it is included in both CDA and FHIR IGs defining standardized exchange of advance directive information. 
  • There is a well-established value set for representing care experience preferences. (Care Experience Preferences at End of Life Grouping, urn:oid:2.16.840.1.113762.1.4.1115.11)
We strongly recommend this data element be advanced to USCDI Level 2.

USCDIv3 ADI_Comments_20210927v3_1.pdf

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