AIRA Comments on Sexual Orientation and Gender Identity

AIRA appreciates the work ONC has done around Sexual Orientation and Gender Identity (SOGI), and are exploring updating our SOGI guidance to better align with these referenced codesets.

Additional values in the value set

Gender identity represented in ISA does not represent all different gender identities expressed by the community as a whole. There are additional gender identities that could not be categorized in any of the values existing in the current version. For example – there are community members identifying themselves as ‘Transgender’ rather than either ‘Male Transgender’ or ‘Female Transgender’.

Youth have shared mixed preferences on the inclusion of transgender identity in gender identity questions versus having a separate question about transgender experience. They have also expressed mixed preferences on the binary “transgender male/transgender female” option versus a general “transgender” label.

Similarly, there are additional categories that are presently represented by ‘other’ which accurately represents additional gender identities, as follows:

  • Male
  • Female
  • Cis or Cisgender*
  • Transgender Male
  • Transgender Female
  • Transgender (non-specific)*
  • Non-binary*                                     
  • Gender-queer
  • Two-spirit*
  • Gender fluid*
  • Bigender*
  • Demigirl*
  • Demigirl*
  • Demiboy*
  • Questioning/not sure*
  • Choose not to disclose
  • Other, please describe
  • Unknown


*New values being proposed

Note: Other values is recommended for addition based on best practices


ASKU does not mean Choose not to disclose

Based on the cited codeSystem ( 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

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.




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

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.

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.  

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.

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.

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.



JAMIA - Transgender Health and EMRs.pdf

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