Data Element

Information from the submission form

Quality of Life Priorities
Description
A PACP may contain a person’s quality of life priorities based on their personal values for what is important to them in order to have a good quality of life. They may value such things as being able to take care of themselves without needing physical help from loved ones, or being able to live without depending on machines to keep them alive, or living as long as possible by receiving all the medical care doctors believe will help them. The intent of the quality of life priorities is to provide guidance to the future care team, in a situation where the person is unable to communicate for his or her self, that informs their healthcare agent as to what is important to them and provides guidance to the care team when treatment decisions need to be made on the person’s behalf.

Comment

Advance “Quality of Life Priorities” to USCDI Level 2

The “Quality of Life Priorities” data element provides details on a person’s quality of life priorities based on their personal values for what is important to them in order to have a good quality of life.  The need and maturity of this data element has been validated by the PACIO community. 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 (81340-2 Goals And/Or preferences in order of priority [Reported]) and it is part of both CDA and FHIR IGs.
  • There is a well-established value set for representing priorities. (Health Goals at End of Life Grouping, urn:oid:2.16.840.1.113762.1.4.1115.7)
We strongly recommend the “Quality of Life Priorities” data element be advanced to USCDI Level 2.

USCDIv3 ADI_Comments_20210927v3_5.pdf

PACIO supports advancing “Quality of Life Priorities” to Level 2

The PACIO Project strongly recommends the advancement to USCDI Level 2 for the “Quality of Life Priorities” data element. Exchanging and understanding the patient's "Quality of Life Priorities" provides a key patient context that is so important to consider when delivering healthcare. 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 of 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.

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