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  1. FHIR Specification Feedback
  2. FHIR-40092

Handle “personal characteristics” as Observations versus elements on Patient

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    • Icon: Change Request Change Request
    • Resolution: Not Persuasive with Modification
    • Icon: Medium Medium
    • US Core (FHIR)
    • 6.0.0-ballot [deprecated]
    • Cross-Group Projects
    • STU
    • US Core Observation Sexual Orientation Profile
      US Core Patient Profile
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      Will keep the elements under discussion on the Patient Resource and provide guidance in the Patient resource Profile specific implementation guidance section that "the collection method and performer can be captured Provenance and the standard FHIR Target Element Extension".  As well, we will update the Provenance page to document this as informative guidance.

       

      Background:

      See: Provenance for Personal Characteristics.html

      archived attachment  Provenance for Personal Characteristics.html

       

      Rationale:

       

      FHIR accommodates changes in data over time and doesn't necessarily make Observation a better choice than Patient. The complexity of using Provenance over Observation can be offset by the need for SMART clients to request Observation scopes, granular scopes, and multiple API calls. Ultimately, splitting the same data information between Patient and Observation may be more operationally complex than keeping demographic data on the Patient resource and using Provenance to track changes in these personal characteristics.  This does not preclude implementers from supporting both ways.  ( Eg. via form capture)

      In the future, we may revisit this issue based on the community ( and Gravity) experience.

       

       

       

       

       

      Show
      Will keep the elements under discussion on the Patient Resource and provide guidance in the Patient resource Profile specific implementation guidance section that "the collection method and performer can be captured Provenance and the standard FHIR Target Element Extension".  As well, we will update the Provenance page to document this as  informative guidance.   Background: See: Provenance for Personal Characteristics.html archived attachment  Provenance for Personal Characteristics.html   Rationale:   FHIR accommodates changes in data over time and doesn't necessarily make Observation a better choice than Patient. The complexity of using Provenance over Observation can be offset by the need for SMART clients to request Observation scopes, granular scopes, and multiple API calls. Ultimately, splitting the same data information between Patient and Observation may be more operationally complex than keeping demographic data on the Patient resource and using Provenance to track changes in these personal characteristics.  This does not preclude implementers from supporting both ways.  ( Eg. via form capture) In the future, we may revisit this issue based on the community ( and Gravity) experience.          
    • Eric Haas / Rob McClure : 20-1-0
    • Clarification
    • Non-substantive

    Description

      The Gravity SDOH CC IG includes draft “Personal characteristics” profiles because this data (e.g., Race and Ethnicity (R/E), gender identity, sexual orientation, recorded sex and gender, and personal pronouns) is important to achieving the goal of health equity. The intent of adding the Draft “Personal characteristics” profile in Gravity was to influence representation of “personal characteristics” in US Core (see https://build.fhir.org/ig/HL7/fhir-sdoh-clinicalcare/draft_specifications_for_personal_characteristics.html#us-core-intent)

       

      In the SDOH CC IG, personal characteristics data is represented using Observation profiles to address some of the standards-based challenges for collection and exchange of personal characteristics data. For example, some state insurance policies may require payers and/or providers to include R/E data in reporting and some states may require capturing the source (i.e., performer) and collection method for R/E data (e.g., the Oregon Health Authority, Office of Equity and Inclusion Division 70, Race, Ethnicity, Language and Disability Demographic Data Collection Standards has rules and policy related to collection of R/E data.) 

       

      In US Core, although sexual orientation is represented using US Core Observation Sexual Orientation Profile, other “personal characteristics” are represented as extensions on Patient profile (e.g., race, ethnicity, gender identity, etc.). “Personal characteristics” data should be represented using Observation because it is different from the demographic information (e.g., name, address, DOB) represented using Patient profile.

       

      Additionally, attaching sensitive, personal information to the Patient profile, which is frequently exchanged and/or referenced, may complicate privacy/consent for associated “personal characteristic” data items. 

       

      Finally, if some “personal characteristics” continue to be represented using Patient extensions, the extensions may need to be expanded to include source and method and allow multiple instances (e.g., cardinality of the extension expanded from 0..1 to 0..*).

      Attachments

        1. Provenance for Personal Characteristics.html
          35 kB

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          People

            Unassigned Unassigned
            corey_spears Corey Spears
            David Hill, Matt Elrod, Saul Kravitz
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            Dates

              Created:
              Updated:
              Resolved: