Uploaded image for project: 'FHIR Specification Feedback'
  1. FHIR Specification Feedback
  2. FHIR-35325

For Observation.method value set, clarify definition for "reported-by-related-person" and add guidance related to use of "self-reported" and "reported-by-related-person".

    XMLWordPrintableJSON

Details

    • Icon: Change Request Change Request
    • Resolution: Not Persuasive with Modification
    • Icon: Highest Highest
    • US SDOH Clinical Care (FHIR)
    • current
    • Patient Care
    • STU
    • SDOHCC Observation Ethnicity OMB
      SDOHCC Observation Race OMB
    • Hide

      Restrictions were not added to the definition of "reported-by-related-person” because, in areas not related to personal characteristics, “reported-by-related-person” may be used in a different context.

      However, to address this concern, the following guidance will be added to the section on Draft Specifications for Personal Characteristics: 

      With respect to the values for method, the general recommendation is that personal characteristics should be determined by attestation of the subject. In the event that the subject is a minor or incapable of attesting, there may be situations where a related person may report on their behalf, and this might be captured as “reported-by-related-person”. Additionally, “reported-by-related-person” may apply when an individual is a subscriber to an insurance plan and supplies the plan with information (e.g., recorded sex) of other members/related persons included on the policy. However, when a competent adult is relaying their information to a “related-person”, who is merely filling out a form or sharing that information on their behalf, the general recommendation of this implementation guide is to use “self-reported” as opposed to “reported-by-related-person”.

      Show
      Restrictions were not added to the definition of "reported-by-related-person” because, in areas not related to personal characteristics, “reported-by-related-person” may be used in a different context. However, to address this concern, the following guidance will be added to the section on Draft Specifications for Personal Characteristics:  With respect to the values for method, the general recommendation is that personal characteristics should be determined by attestation of the subject. In the event that the subject is a minor or incapable of attesting, there may be situations where a related person may report on their behalf, and this might be captured as “reported-by-related-person”. Additionally, “reported-by-related-person” may apply when an individual is a subscriber to an insurance plan and supplies the plan with information (e.g., recorded sex) of other members/related persons included on the policy. However, when a competent adult is relaying their information to a “related-person”, who is merely filling out a form or sharing that information on their behalf, the general recommendation of this implementation guide is to use “self-reported” as opposed to “reported-by-related-person”.
    • Bob Dieterle / Laura Heerman-Langford : 8-0-0
    • Clarification
    • Non-substantive

    Description

      Feedback with respect to these two values in the value set for Observation.method:
      • "self-reported" - Ideally, this would be the gold-standard method for collecting race or ethnicity data in individuals who are competent and of age to provide such information.
      • "reported-by-related-person" - Given that race is a social construct, there is a likelihood that a "related person" could identify an individual in a different way than the individual self-identifies.

      For these reasons, the use of "reported-by-related-person" should be limited to one of the following:
      1) minor patients (e.g., parents/guardians would provide the information on behalf of the patient)
      2) patients who are incompetent or incapable of providing this information themselves (e.g., guardians/caretakers would provide the information on behalf of the patient)

      Additionally, the definition for "reported-by-related-person" should clarify that this reason should only be used in the above two cases (for minors or patients who are not competent to answer on their own behalf) and that "reported-by-related-person" does not apply when a competent, adult patient is relaying information to someone who is merely filling out a form on their behalf. In this case, we feel that the method should be "self-reported".|

      Attachments

        Activity

          People

            Unassigned Unassigned
            molly.malavey@ama-assn.org Molly Reese (Inactive)
            Corey Smith, Molly Reese (Inactive), Monique van Berkum
            Watchers:
            3 Start watching this issue

            Dates

              Created:
              Updated:
              Resolved: