Patient Demographics/Information

CDC's comment on behalf of ASTHO ( WA DOH)

Gender identity defined in USCDI v2 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’. Similarly, there are additional categories that are presently represented by ‘other’ which accurately represents additional gender identities, as follows:

• Male
• Female
• Transgender Male
• Transgender Female
• Transgender (as non-binary)*
• Non-binary*
• Gender-queer
• Two-spirit*
• Questioning/not sure*
• Choose not to disclose
• Not listed, please describe*
• Unknown

*New values being proposed
 

CDC's Consolidated Comment

Gender Identity

• Addressing health equity tasks through the USCDI in a scope of the SOGI, the USCDI should contain 5 data elements (Gender Identity, Sex assigned at birth, Sexual Orientation, Sex for Clinical Use Note and Patient Pronoun). The last two mentioned data elements were not included into the v.3. We recommend including the Sex for Clinical Use Note (within the Clinical Notes data class) and Patient Pronoun (within the Patient Demographic) into the next, the USCDI v.4 version.
• We propose adding the LOINC code 76691-5, Gender Identity, for the Gender Identity question (it was missed in the current v.3)
• We suggest updating the value set for Gender Identity responses that has been already included into the Gender Identity data elements by ONC in v.3. Specifically, we suggest adding two more values: Non-Binary (SNOMED 772004004) and Two-Spirit that refers to a person who identifies as having both a masculine and a feminine spirit and is used by some Indigenous people to describe their sexual, gender and/or spiritual identity.

CSTE Comment:

• While more work is needed to develop public health community consensus on the best way to collect and exchange data on gender identity, and there is variability in how these data are currently collected by health care as well as by health departments, CSTE supports the use of multiple questions to describe gender identity and sex, specifically Gender Identity and Sex for Clinical Use (a category that is based upon clinical observations typically associated with the designation of male and female). This is the recommendation of the HL7 Gender Harmony project (http://www.hl7.org/implement/standards/product_brief.cfm?product_id=564 http://www.hl7.org/documentcenter/private/standards/HL7_GENDER_R1_INFORM_2021AUG.pdf ). Sex assigned at birth as a term is controversial among members of the LGBTQ community and some individuals opt to correct or revise their sex on a birth certificate.
• Values for gender identity should include male, female, nonbinary, exploring or questioning, another not listed (specify), choose not to disclose, and unknown. CSTE recommends that the terms transgender, female to male and transgender male to female be deprecated.
• Values for sex for clinical use should include female, male, unknown, and something not listed (specify)

HL7 Gender Harmony Project Gender Identity value set

The HL7 Gender Harmony (GH) project today voted to make the following concepts the MINIMUM set of concepts that all GH-conformant systems SHALL support when representing Gender Identity:

From SNOMED CT (International edition in May release, currently in US and Canadian editions):

And also from the HL7 Null Flavor code system:

UNK Unknown

We want to stress that these concepts are rarely expected to be the only allowed values for systems capturing and representing gender identity. For example the codes currently in the USCDI proposed set can be added to this list. It should be noted that it is our recommendation that systems should not "roll up" concepts they may collect or receive into these minimum values. Each gender identity should be considered unique and independent in meaning. We also expect that addition Null-type codes will be of value in specific systems and requirements, such as USCDI. The GH project will be creating a value set with this minimum set in the near future. 

NCPDP Comments on USCDI draft V3

Recommend adding Non-Binary (NCPDP Definition: An umbrella term for people with gender identities that fall somewhere outside of the traditional conceptions of strictly either female or male) as a valid value for Gender Identity to align with the values defined by NCPDP. NCPDP also recommends adding Pronouns (NCPDP Definition: A set of pronouns an individual would like others to use when talking to or about that individual) using the LOINC codes to align with NCPDP identifiers defined.

Update Options In-Line with Best Practices

The options here should be in-line with those discussed by clinicians and researchers here: https://doi.org/10.1093/jamia/ocab136.

Additionally, culturally-specific gender identities such as Two-Spirit, Palao'ana, and Māhū should be included given their specific usage in the United States.

Doing this is in-line with best practices and with the HL7 Gender Harmony Project.

Revise current list

The terms Female-to-Male and Male-to-Female listed here are obsolete and inappropriate. The terms transgender woman, trans woman, transgender man, and trans man are accurate descriptors of medical history but not of gender directly. Binary trans women and men may be correctly identified simply as women and men, without separate categories, and nonbinary trans people as nonbinary. It is widely recognized that listing trans women and trans men as separate categories from women and men results in a harmful and incorrect understanding that binary trans people are not "real" women and men.

Outdated terms and need for further categories

The "female to male" and "male to female" terms listed here are obsolete and reflect a transphobic attitude toward trans people. Trans men are men; trans women are women. Their gender identities may be distinct from their status as being trans. It is widely recognized that listing trans women and trans men as separate categories from women and men results in a harmful and incorrect understanding that binary trans people are not "real" women and men.

I would also advocate for inclusion of further categories beyond "Genderqueer". I am nonbinary and agender, and my gender identity is categorically different from that of many other people who could also fall under the umbrella term "genderqueer". Without ways to accurately represent people with diverse gender identities, we lose important information about who Americans are, and what outcomes and experiences people with different genders face. The list of options presented should capture the most information possible while still being accurate, respectful and inclusive.

Question should follow best practices from the literature

This question currently does not but should follow the best practices developed in the literature (e.g. https://academic.oup.com/jamia/article/29/2/271/6364772). As a trans person myself, I would select female over the “MTF/transgender female/trangender woman” and I think many people feel the same, so why then is it an option? This way of asking the question implies that transgender women are not “female.” Instead, just ask gender identity (e.g. male, female, non-binary/genderqueer, other, prefer not to reply) and gender assigned at birth (e.g. Male, female, X, prefer not to say) as two separate questions, and then transness can be inferred. Additionally, explicitly including "non-binary" as opposed to just having "genderqueer, neither exclusively ..." as a category would be in line with the best practices as laid out in the literature.

Gender is not equivalent to medical history

The terms Female-to-Male and Male-to-Female listed here are obsolete and inappropriate. The terms transgender woman, trans woman, transgender man, and trans man are accurate descriptors of medical history but not of gender directly. Binary trans women and men may be correctly identified simply as women and men, without separate categories, and nonbinary trans people as nonbinary. It is widely recognized that listing trans women and trans men as separate categories from women and men results in a harmful and incorrect understanding that binary trans people are not "real" women and men. Please see https://academic.oup.com/jamia/article/29/2/271/6364772 for further discussion.

Outdated Terms/Redundant Categories

FTM and MTF are outdated and unnecessary terms, as man/male and woman/female convey the gender of the individual. Additionally, as cis and trans individuals often have the same gender (man or woman), it is redundant and will lead to underestimates of trans individuals who select terms like male/female rather than transgender male/transgender female. This publication can be referenced https://academic.oup.com/jamia/article/29/2/271/6364772. One improvement would be to utilize a two-step question process integrated with assigned sex to determine gender, sex, and gender modality (transgender or cisgender). Another option would be to have multiple selections available, so that an individual can choose a gender and gender modality from the same question's answer choices. This would also accommodate individuals with genders encompassing multiple terms, such as bigender/two-spirit respondents who may want to select multiple gender options.