HL7's Gender Harmony Project Feedback Survey

HL7 is an international healthcare standards organization. Through its Gender Harmony Project it is working to improve the standardization of sex and gender data collection and exchange in health care systems.

For more information, and to join the conversation, visit our website .

In this survey we ask for your input on our proposed set of values for when recording Gender Identity in clinical systems.

The survey will be open until September 30th, 2020 .

HL7’s Gender Harmony project defies Gender Identity as:

An individual's personal sense of being a man, woman, boy, girl, or something else [EP1] .

Gender [FF2] [EP3] Table

The set of proposed values includes four values at the top of the list, shaded in yellow, that this project is recommending that all implementers must support in all cases.

These values compose the minimum binding that any conformant system must be able to accept and use.

Description

Synonyms

Definition

male

man, male gender, male/man, masculine [EP4]

Gender identity indicating male persona. When recorded this may be specific to the jurisdiction [EP5] where the record was created.

female

woman, female gender, female/woman, feminine [EP6]

Gender identity indicating female persona. When recorded this may be specific to the jurisdiction where the record was created.

non-binary [EP7]

non-binary gender, nonbinary, non-binary, gender nonconforming, enby

Gender identity that is neither a male or female persona.

non-disclosed gender

choose not to answer

No gender identity specified.

trans

transgender

 

transgender male/man

transgender man, transgender male, transman, transmasculine

See Privacy Note

transgender female/woman

transgender female, transgender woman, transwoman, transfeminine

See Privacy Note

cisgender male/man

cisgender man, cisgender male

See Privacy Note

cisgender female/woman

cisgender women, cisgender female

See Privacy Note

genderqueer [FF8] [EP9]

non-binary

 

genderfluid

 

 

sister [FF10] -girl

 

 

brother [FF11] -boy

 

 

two-spirit [EP12]

 

 

pangender

 

 

gender neutral

genderless, agender, neutrois

 

gender diverse

gender nonconforming

 

unsure

questioning

 

third gender

 

 

bigender

 

 

agender [FF13]

 

 

demigender

 

 

transfeminine [FF14]

transfem, trans fem

 

transmasculine [FF15]

transmasc, trans masc

 

boy*

 

 

girl*

 

 


*Note that the last two items are age-specific gender codes that we should discuss as to if they should be included.

Privacy Note: The terms transgender and cisgender reveal private sex information. Some people may desire to reveal that information as part of their public gender identity. Where this kind of disclosure is permitted, care needs to be taken to ensure that this code is used only when it is the patient’s desire that private sex information be disclosed. [EP16]

  1. Is the gender table accurate? [EP17]

 

Very inaccurate

 

Somewhat inaccurate

 

Neutral

 

Somewhat accurate

 

Very accurate

 

  1. Is the gender table list of values complete?

Not complete at all

Somewhat complete

Neutral

Mostly complete

Very complete

  1. How do you feel about the gender table? [EP18]

 

  1. Should this value set include “Girl” and “Boy”?

 

Yes

 

No [EP19]

 

Other (please specify)

 

  1. What data elements would you like to see modified? And how?

 

  1. What needs improvement? Please mention specific section(s) and/or definition(s).

 

  1. Other comments and/or suggestions [EP20]

 

Survey made and managed by Roz Queen as part of HL7's Gender Harmony Project.


[EP1] Does not align with the categories “male, female,..” listed below

Consider instead “An individual's personal sense of being male, female, or something else ”.

 

Is “something else” offensive?

[FF2] Recommend that definition be provided for the rest of the items on the table.

[EP3] I agree. Definitions beyond the yellow highlighted can be provided. At minimum, defining transgender and cisgender is helpful

[EP4] Add boy

[EP5] What does this mean?

Specific to the time and place that the information was being collected?

[EP6] Add girl

[EP7] If I am understanding correctly, these 1 st 4 highlighted cells are intended for a minimum set that would allow appropriate response options for all individuals.

 

If this is the case than the term “non-binary” should ideally work as a blanket term that captures all of the genders listed below that are not male or female, and I am not sure it does. Does this need to be confirmed/tested?

 

We know that “other” does not work here, but are there any other good options? “Does not identify as male or female gender”

 

 

[FF8] Recommend removal and adding as synonym of non-binary above

[EP9] It seems that they are trying to provide 1 st 4 categories as minimum set to use for closed options, and that non-highlighted would all be provided in addition, so not intended to be mutually exclusive

[FF10] Is this a synonym of transgender female/woman ?

[FF11] Is this a synonym of transgender male/man?

[EP12] May only be appropriate to ask individuals who have identified as Indigenous.

[FF13] Recommend removal as this is indicated as synonym of gender neutral above

[FF14] Recommend removal as this is indicated as synonym of transgender female/woman above

[FF15] Recommend removal as this is indicated as synonym of transgender male/man above

[EP16] Also an opportunity here to explain alternative option for transgender individuals to be identified in the data by using both sex at birth and gender information together

[EP17] Neutral. Even if currently accurate, terms may change

[EP18] Could clarify the highlighted versus non-highlighted cells? Perhaps examples of use might help.

[EP19] I would say “no”, because “man/woman” is not used and instead “male” and “female” are used.

 

Suggest adding boy and girl to “synonyms” for male, female, respectively. 

 

 

“male gender”, “female gender” could also be considered as the response categories for clarity.

[EP20] Would be easier to comment on these options if presented together with questions on sex.