Data used to categorize individuals for identification, records matching, and other purposes.

Data Element
Pronouns
Description

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.”
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
Healthcare Aims
  • Improving patient experience of care (quality and/or satisfaction)
  • Improving the health of populations
  • Improving provider experience of care
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).
https://loinc.org/90778-2/
Additional Specifications HL7 Informative Document: Gender Harmony - Modeling Sex and Gender Representation, Release 1
http://www.hl7.org/implement/standards/product_brief.cfm?product_id=564
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
Supporting Artifacts 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
Potential Challenges
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 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
Criterion #1
Maturity - Current Standards		 Level 2 - Data element is represented by a terminology standard or SDO-balloted technical specification or implementation guide.
Criterion #2
Maturity - Current Use 		Level 2 - Data element is captured, stored, or accessed in multiple production EHRs or other HIT modules from more than one developer.
Criterion #3
Maturity - Current Exchange		 Level 2 - Data element is electronically exchanged between more than two production EHRs or other HIT modules of different developers using available interoperability standards.
Criterion #4
Use Case(s) - Breadth of Applicability		 Level 2 - Use cases apply to most care settings or specialties.

Comment

Submitted by Kristic333 on

Cornell Health Comments on Draft USCDI v5

Collecting and using the pronouns used by the patient helps set the patient at ease and helps to establish trust. Having this information also helps us identify health related trends within the LGBTQ+ community and helps us measure how well we are meeting the needs of the different groups we serve. Without this information, lesbian, gay, bisexual, and transgender (LGBT) patients and their specific health care needs cannot be identified, the health disparities they experience cannot be addressed, and important health care services may not be delivered. Understanding sexual orientation, gender identity, sex assigned at birth, name used, and pronouns, as well as their anatomical inventory, is necessary in order to provide culturally affirming and responsive health care.

 

Submitted by pwilson@ncpdp.org on

NCPDP Comments on USCDI draft v5

NCPDP supports the use of LOINC for the data element Pronoun in the NCPDP SCRIPT Standard v2017071.

Submitted by Steven.Lane on

Provider support for Pronouns in USCDI v5

Patient trust is central to the effectiveness of medical care, impacting individuals' willingness to access care, to accept and adhere to medical advice.  When a patient has shared with a provider or caregiver their preferred Pronouns and this data has been captured in a health IT system, we owe it to the individual to share this information along with other core demographic data.  Routine exchange of this data, when it is available, will contribute to equitable access to and utilization of care by individuals who may otherwise experience unnecessary challenges and impediments as a part of the care process.

Submitted by erjones on

Please Include Pronouns in Draft USCDI v4

Consistent with Vizient’s prior comments regarding USCDI v3, Vizient support including a data element for collection of person identified pronouns. Person reported pronouns, when used in conjunction with other gender and sex-related data elements, are an important part of care, and a standardized data field will provide accuracy and allow providers to deliver more patient-centered care.

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