|Submitted By: Robert McClure, MD / HL7 International|
|Data Element Information|
|Rationale for Separate Consideration||This is a specific type of name that needs to be considered as a unique data element distinct from other patient name types, e.g: First name, last name, previous name.|
|Use Case Description(s)|
|Use Case Description||These use cases are supported by the work defined within the Gender Harmony HL7 informative publication: http://www.hl7.org/implement/standards/product_brief.cfm?product_id=564 and also by a JAMIA article describing the project and it’s need: https://academic.oup.com/jamia/advance-article/doi/10.1093/jamia/ocab196/6382238?guestAccessKey=016faba4-edcc-4cbd-b5bc-27d3452d2ce1.
Name to use: Clearly specifying the name to be used when interacting with the patient is foundational to a supportive and meaningful relationship. Additionally it provides a data element that can be used to mark a clear transition noting that the patient has changed the name to align with a desired persona. This is distinct from a legal name or other types of names. The Name To Use can also rapidly reflect proper naming even when other names, such as the legal name may not change as easily or quickly.
Pronouns: Pronouns are effectively similar to the name to use in clarifying proper reference verbage for the patient and can be used to engage in supportive interactions. Proper pronoun use cannot be inferred from a patient name because some patients use gender-neutral names or may desire use of pronouns that do not typically align with social norms. Health system pronoun documentation should be supported independent of other related sex and gender elements, including Recorded Sex or Gender (which is recommended to document changes to legal documents including birth certificates, jurisdictional identification cards (e.g., drivers licenses etc.).
|Estimated number of stakeholders capturing, accessing using or exchanging||Both Name to Use and Pronouns are widely implemented in systems and should be considered Level 2|
|Link to use case project page||http://hl7.me/GHP|
|Maturity of Use and Technical Specifications for Data Element|
|Applicable Standard(s)||LOINC Personal pronouns – Reported 90778-2
LOINC does not have a specific observable that aligns directly with “Name to use”
Recommendation for USCDI v3 Alignment with HL7 and LOINC
he/him/his/his/himself H (LA29518-0)
she/her/her/hers/herself S (LA29519-8)
they/them/their/theirs/themself T (LA29520-6)
Something else, please specify: nullFlavor OTH
Unknown nullFlavor UNK
Other options are permissible, such as neopronouns (ze/hir, ey/em, etc.) and options such as “use only my name” or “any pronouns”, in addition to the above minimum set. For further recommendations related to pronouns, see Kronk et al (2021).
|Additional Specifications||HL7 Informative Document: Gender Harmony - Modeling Sex and Gender Representation, Release 1
The intent is to have changes to support the implementation of the Gender Harmonly Logical Model in FHIR R5. In addtion there will be a Gender Harmony specific FHIR IG in September 2022 ballot that provides additional guidance across HL7 products including V2 and C-CDA.
For Name To Use, FHIR already supports this element through the use of HumanName datatype. HumanName.use = “Usual”.
|Current Use||In limited use in production environments|
Utilized in Epic EHR although in Epic-specific way. Found in modifications to support the need by the EHR in use at Fenway Health systems in Boston, MA.
|Number of organizations/individuals with which this data element has been electronically exchanged||N/A|
|Restrictions on Standardization (e.g. proprietary code)||none|
|Restrictions on Use (e.g. licensing, user fees)||none|
|Privacy and Security Concerns||Some systems may determine there are privacy implications of this data but the intent is to make this openly available given it is intented to support direct interactions with the patient.|
|Estimate of Overall Burden||Implementing additional fields to collect this information is the only potential burden.|
|ONC Evaluation Details
Each submitted Data Element has been evaluated based on the following 4 criteria. The overall Level classification is a composite of the maturity based on these individual criteria. This information can be used to identify areas that require additional work to raise the overall classification level and consideration for inclusion in future versions of USCDI
|Maturity – Standards/Technical Specifications||Level 1/2 - Must be represented by a vocabulary standard or an element of a published technical specification|
|Maturity - Current Use||Level 2 - Used at scale in more than 2 different production environments|
|Maturity - Current Exchange||Level 2 - Demonstrates exchange between 4 or more organizations with different EHR/HIT systems|
|Breadth of Applicability - # Stakeholders Impacted||Level 2 - Used by a majority of patients, providers or events requiring its use|