Representing Patient Gender Identity

Type	Standard / Implementation Specification	Standards Process Maturity	Implementation Maturity	Federally required	Cost	Test Tool Availability
Standard for observations	LOINC®	Final	Production	No	Free	N/A
Standard for observation values	SNOMED CT® U.S. Edition	Final	Production	Yes	Free	N/A
Standard for observation values	HL7® Version 3 Null Flavor	Final	Production	Yes	Free	N/A

Limitations, Dependencies, and Preconditions for Consideration	Applicable Value Set(s) and Starter Set(s)
An article in JAMIA provides helpful information for planning and implementing sexual orientation and gender identity data collection in electronic health records. Even though clinicians and their patients would benefit from having these data in patient records, this does not suggest that it is the sole responsibility of clinicians and their staffs to collect these sensitive data. When patients provide a response to this question in a patient portal, it could contradict with the information collected by providers. For more information about observations and observation values, see Appendix II for an informational resource developed by the Health IT Standards Committee. The Gender Harmony Project is updating the representation of several sex-related concepts, including gender identity. Their proposed value set (extensible for other use cases) for gender identity does not include the concepts of Female-to-Male (FTM)/Transgender Male/Trans Man, Male-to-Female (MTF)/Transgender Female/Trans Woman, or Additional gender category or other, please specify. HL7 Version 3 code: OTH that are included in the ONC value set which was established in regulation and incorporated by reference.	Gender identity. LOINC code: 76691-5 Male. SNOMED CT U.S. Edition code 446151000124109 Female. SNOMED CT U.S. Edition code 446141000124107 Female-to-Male (FTM)/Transgender Male/Trans Man. SNOMED CT U.S. Edition code: 407377005 Male-to-Female (MTF)/Transgender Female/Trans Woman. SNOMED CT U.S. Edition code: 407376001 Identifies as non-conforming gender (SNOMED CT U.S. Edition synonyms include: Genderqueer; Identifies as neither exclusively male nor female, Non-binary gender) SNOMED CT U.S. Edition code: 446131000124102 Additional gender category or other, please specify. HL7 Version 3 code: OTH Choose not to disclose. HL7 Version 3 code: ASKU

Limitations, Dependencies, and Preconditions for Consideration

Applicable Value Set(s) and Starter Set(s)

An article in JAMIA provides helpful information for planning and implementing sexual orientation and gender identity data collection in electronic health records.
Even though clinicians and their patients would benefit from having these data in patient records, this does not suggest that it is the sole responsibility of clinicians and their staffs to collect these sensitive data.
When patients provide a response to this question in a patient portal, it could contradict with the information collected by providers.
For more information about observations and observation values, see Appendix II for an informational resource developed by the Health IT Standards Committee.
The Gender Harmony Project is updating the representation of several sex-related concepts, including gender identity. Their proposed value set (extensible for other use cases) for gender identity does not include the concepts of Female-to-Male (FTM)/Transgender Male/Trans Man, Male-to-Female (MTF)/Transgender Female/Trans Woman, or Additional gender category or other, please specify. HL7 Version 3 code: OTH that are included in the ONC value set which was established in regulation and incorporated by reference.

Comment

Submitted by LisaRNelson on 2023-06-15

ASKU does not mean Choose not to disclose

Based on the cited codeSystem (http://terminology.hl7.org/CodeSystem/v3-NullFlavor) the meaning of ASKU is "asked but unknown". The subtly of "choosing not to disclose" is meaningful and is not captured in the ASKU notion defined in the HL7 nullFlavor code system. "choosing not to disclose" is best represented with the concept "asked-declined" in the data absent reason code system. ASKU | asked but unknown | Information was sought but not found (e.g., patient was asked but didn't know) If the goal is to express the notion of "choose not to disclose", then you need to use the concept "asked-declined" from the Code System http://terminology.hl7.org/CodeSystem/data-absent-reason. Please note that this comment actually applies in many places throughout the ISA and should be changed consistently where ever the use of the notion "choose not to disclose" is indicated.

Submitted by jkegerize on 2022-08-18

ACLA ISA comment re: Representing Gender Identity

We suggest that if AMA codes are added to the ISA, they should be added in the appropriate category of their use. For example, 55970 and 55980 as a new Gender Identity section under the existing Procedures category, perhaps with a new “sub-category” added to existing “Dental” and “Medical Procedures” sub-categories. Codes associated with billing functions are more appropriate under the Administrative section. Current ISA Procedures

Submitted by mattreid on 2020-03-26

The AMA requests that the…

The AMA requests that the Current Procedural Terminology (CPT) code set be added to the standards listed in Section I: Representing Patient Gender Identity. CPT code 55970 identifies an intersex surgery of male to female. CPT code 55980 identifies an intersex surgery of female to male. Evaluation and Management codes for a new patient (99381) and established patient (99391) include completing a gender appropriate history, exam, counseling and interventions. CPT is a comprehensive and regularly curated uniform language that accurately describes medical, surgical, and diagnostic services and provides for reliable communication among users. It has an extremely robust and mature development process with open and transparent meetings and clinical input from national medical specialties and relevant stakeholders. It is the most widely adopted outpatient procedure code set. Use of the CPT code set is federally required under HIPAA.

Submitted by shellyspiro on 2018-10-01

Pharmacy HIT Collaborative's Comments on ONC's Proposed 2018 ISA

The Pharmacy HIT Collaborative supports using LOINC and SNOMED CT; however, we ask for clarification as to why HL7 Version 3 Null Flavor was removed for 2018 review; it was added to the final 2017 ISA.

Submitted by dvreeman on 2018-09-27

Regenstrief - Comment

We concur with the recommendations on the use of LOINC and SNOMED CT (and null flavor) here. A new concept (and corresponding answer list) request for “Personal pronoun” will be submitted to LOINC and made available in a subsequent release.

Submitted by gdixon on 2018-09-12

Personal Pronoun Value Set needed

It is important and respectful to the patient to record their personal pronoun. Establish a value set for personal pronoun and include in transition of care documents.

Submitted by baxterjanetc@g… on 2017-11-20

standard for preferred pronoun

Please consider also a standard for preferred pronoun. Assuming gender based on the first name or registered sex and/or gender preference can present challenges to health care providers and their teams. In 2013, the World Professional Association for Trangender Health Electronic Medical Record Workging Group published recommendations for how gender should be recorded in EHRs. These recommendations specify that “Preferred Name, gender identity and pronoun preference, as defined by the patient, be included as demographic variables collected in the EHR.

https://academic.oup.com/jamia/article/20/4/700/2909343

AllianceChicago

JAMIA - Transgender Health and EMRs.pdf

Submitted by cgrasso on 2017-11-20

Prounouns and name used are necessary too

We think that the Applicable Value Set(s) and Starter Set(s) provide appropriate answer options to measure current gender identity. We also encourage the Office of the National Coordinator of Health Information Technology to encourage providers to ask the patient what pronoun and name the patient uses, use that pronoun and name when interacting with the patient, and enter this information into the Electronic Health Record. Knowledge of this information is essential to providing affirming health care to transgender patients.

Chris Grasso, MPH

Associate Vice President for Informatics and Data Services

Fenway Health

Submitted by kwboone on 2017-11-20

Please consider appropriate…

Please consider appropriate vocabulary for preferred pronoun. It would be extremely helpful to improve the patient-provider experience.

Submitted by pwilson@ncpdp.org on 2017-11-20

NCPDP - Comment

NCPDP currently uses sex/gender values of (M)ale, (F)emale and (U)nknown. NCPDP is evaluating future modifications to include additional gender identity concepts.

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