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  1. FHIR Specification Feedback
  2. FHIR-35338

Concern over race and ethnicity data of "related person" and "practitioner"

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    • Icon: Change Request Change Request
    • Resolution: Persuasive with Modification
    • Icon: Highest Highest
    • US SDOH Clinical Care (FHIR)
    • current
    • Patient Care
    • STU
    • SDOHCC Observation Ethnicity OMB
      SDOHCC Observation Race OMB
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      With respect to the “practitioner”, the intent is not to collect the practitioner’s personal characteristics (e.g., race/ethnicity data) as part of an encounter. Rather, the intent is that this information might be available with other relevant information provided about a practitioner (e.g., their office address, languages spoken, etc.). In general, it is assumed that this would be self-reported by a practitioner (hence voluntary) and that a practitioner would consent to the uses for this information.
      With respect to the “related person”, a patient might provide information about personal characteristics of a related person in the same way that a patient might provide other information about a related person when it is relevant to the care of the patient.
      The following two pieces of guidance will be added to the section on Draft Specifications for Personal Characteristics: 
      1.       In general, personal characteristics data is sensitive personal information with significant privacy and security considerations. Laws vary on the extent to which this data can be disclosed. Before exchanging personal characteristics data, regulatory and policy considerations related to consent and exchange of this data should be understood. Guidance as to the necessary privacy, security, and consent requirements related to the exchange of this data is beyond the scope of this implementation guide. Implementers should understand and abide by their local requirements.
       
      2.       The personal characteristic observations can be used to document not only personal characteristics of the patient but also of other actors (i.e., a practitioner or a related person such as a caretaker) who interact with the patient. Collection and use of personal characteristics data for a practitioner or related person should be treated with the same safeguards as for the patient.
      Additionally, the following comment will be added to the Observation Personal Characteristics Profile:
       
      When the subject is a practitioner, personal characteristics should be based on the attestation and consent of the practitioner.
       
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      With respect to the “practitioner”, the intent is not to collect the practitioner’s personal characteristics (e.g., race/ethnicity data) as part of an encounter. Rather, the intent is that this information might be available with other relevant information provided about a practitioner (e.g., their office address, languages spoken, etc.). In general, it is assumed that this would be self-reported by a practitioner (hence voluntary) and that a practitioner would consent to the uses for this information. With respect to the “related person”, a patient might provide information about personal characteristics of a related person in the same way that a patient might provide other information about a related person when it is relevant to the care of the patient. The following two pieces of guidance will be added to the section on Draft Specifications for Personal Characteristics:  1.       In general, personal characteristics data is sensitive personal information with significant privacy and security considerations. Laws vary on the extent to which this data can be disclosed. Before exchanging personal characteristics data, regulatory and policy considerations related to consent and exchange of this data should be understood. Guidance as to the necessary privacy, security, and consent requirements related to the exchange of this data is beyond the scope of this implementation guide. Implementers should understand and abide by their local requirements.   2.       The personal characteristic observations can be used to document not only personal characteristics of the patient but also of other actors (i.e., a practitioner or a related person such as a caretaker) who interact with the patient. Collection and use of personal characteristics data for a practitioner or related person should be treated with the same safeguards as for the patient. Additionally, the following comment will be added to the Observation Personal Characteristics Profile:   When the subject is a practitioner, personal characteristics should be based on the attestation and consent of the practitioner.  
    • Bob Dieterle / Laura Heerman-Langford : 8-0-0
    • Clarification
    • Non-substantive

    Description

      Section 16.2 of the Draft Specifications for Race and Ethnicity states:The observation profiles allow for the Observation.subject to reference US Core Patient or if Observation.subject is not specified, then the Observation.subject R5 extension SHALL reference US Core Practitioner. If the observation applies to a RelatedPerson then Observation.subject  SHALL reference US Core Patient and Observation.focus SHALL reference RelatedPerson. This allows the use of the race and ethnicity observation to document the race and ethnicity of other actors (practitioner or related person) in the interactions with patients where these characteristics may be important. 

      This suggests that the observed race of someone (family member, friend) accompanying the patient to a visit could be observed and recorded in the encounter record. All of the concerns the AMA has about the accuracy of observation as a method of collecting race/ethnicity data for the patient would obviously apply - but it also seems that the "related person" could have concerns about having their race/ethnicity detailed in the patient record (especially without permission/consent).
      There could also be unforeseen consequences of collecting practitioner race/ethnicity data as part of an encounter. The AMA has had some internal discussions regarding the pros/cons of including these data in health plan provider directories. At the very least, physicians should agree to provide race/ethnicity information voluntarily and should be aware of how the information will be used.

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            Unassigned Unassigned
            molly.malavey@ama-assn.org Molly Reese (Inactive)
            Corey Smith, Molly Reese (Inactive), Monique van Berkum
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              Updated:
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