|Submitted By: Robert McClure, MD / HL7 International|
|Data Element Information|
|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.).
|Estimate the breadth of applicability of the use case(s) for this data element||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
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.
|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.
|Extent of exchange||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.|
Data used to categorize individuals for identification, records matching, and other purposes.
The pronoun(s) specified by the patient to use when referring to the patient in speech, in clinical notes, and in written instructions to caregivers. Personal pronouns* are words used instead of a noun or a noun phrase used to refer to people. Understanding which pronoun(s) to use when referring to someone is important for providing affirming health care. Avoiding incorrect pronoun use and patient misgendering is crucial in transgender and gender-diverse care. It is important to reliably exchange personal pronouns that the individual has specifically reported they want used. The information could be considered a primary (first class) element associated with the demographic information for the patient. However, it may require representation as an observation about the patient. See also CDC’s pronoun recommendations (1); and Affirming Transgender Youths’ Names and Pronouns in the Electronic Medical Record (2) for additional context. Local policy will determine how pronouns are chosen for infants and other similar situations. Policy and local custom will determine what to use when this attribute is not present, or when multiple are present. Different pronouns may be used in one care setting than another care setting. The pronouns used in the work environment may be different than those in the care setting. (1) https://www.cdc.gov/hiv/clinicians/transforming-health/health-care-providers/collecting-sexual-orientation.html (2) https://jamanetwork.com/journals/jamapediatrics/article-abstract/2761803 * Referring to pronouns as “Personal” is something that is not universal across languages, hence the internationally-focused Gender Harmony project uses the general phrase “Pronoun”. In English speaking countries, this element may be called “Personal pronouns.”