HL7 International Gender Harmony Ballot Comments for Feedback

Folks, I have received an email from a SGWG member who was not able to login to post her comments. Here is the member's comments below:

1. Gender identity

(a) In R5 ballot the gender-identity value set is shown in terminology section 4.4.1.478 (www.hl7.org/fhir/2022Sep/valueset-gender-identity.html)
The value set is listed in section 4.4.1.478.1 Content Logical Definition, it includes all the codes in 2.16.840.1.113762.1.4.1021.106 and Unknown
(b) You need a VSAC login-id to access the codes in 2.16.840.1.113762.1.4.1021.106; the only options there are “Unknown, Identifies as female gender, Identifies as male gender,” which we think are insufficient
(c) An alternative set of options listed in FHIR CI-Build (build.fhir.org/valueset-gender-identity.html) include “Identifies as female gender, Identifies as male gender, Identifies as nonbinary gender, Unknown.” I don’t agree with ‘female gender’ and ‘male gender’. We have said throughout our work together that male/female is related to sex, whereas man/boy and woman/girl relate to gender and with ‘non-binary’ of course.
(d) We believe this alternative set of options is acceptable as a basic minimum set of gender identity options because the systems where this set of options will be used may also allow one to add further options as needed. So we propose to vote AFFIRMATIVE for this section. Do you agree? As above

2. Sex for clinical use (SFCU)

(a) In R5 ballot the sex-for-clinical-use value set is listed in terminology section 4.4.1.24 (hl7.org/fhir/2022SEP/valueset-sex-for-clinical-use.html)
(b) For the value set, the codes listed in section 4.4.1.24.2 are “female, male, specified, unknown” with corresponding display values “Female sex for clinical use, Male sex for clinical use, Specified sex for clinical use, Unknown,” respectively
(c) Some SGWG members felt strongly that this data element is discriminatory that promotes cisnormativity, implying anything outside of female and male need to be somehow specified; so we propose to vote NEGATIVE for this section. Do you agree? I agree.
(d) As an alternative, we suggest to change the label to Parameters for clinical use and separate it from Sex altogether, since other non-sex related clinical conditions may require special/specific considerations as well. Do you agree?
(e) Another suggestion is to use Organ inventory with a defined value set to remove having to make assumptions about sex status altogether. Do you agree? I agree.

3. Consistency between FHIR, V2.9.1 and CDA value sets

(a) In HL7 V2.9.1 CH02C_Tables PDF, Table 0821 on p780 for gender Identity shows display names of “Female, Male, Nonbinary, Unknown” and values “446141000124107, 446151000124109, 3379100008710” which are the SNOMED CT conceptIds for “Identifies as female gender, Identifies as male gender, Identifies as nonbinary gender.”
(b) We think the display names in Table 0821 should be the same as the SNOMED CT descriptions with the words “Identifies as” and “gender” included to eliminate any ambiguity that they may refer to male and female sex. Do you agree? Don’t agree with using male and female attached to gender.
(c) In HL7 V2.9.1 CH02C_Tables PDF, Table 0828 on p788 for Sex for clinical use shows values “female, male, specified” with display names of “Female sex for clinical use, Male sex for clinical use, Specified sex for clinical use.”
(d) Some SGWG members felt sex for clinical use and its value sets are discriminatory that promotes cisnormativity, so we propose to vote NEGATIVE for this section. Do you agree? I agree.
(e) As an alternative, we suggest to change the label to Parameters for clinical use and separate it from Sex altogether, since other non-sex related clinical conditions may require special/specific considerations as well. Do you agree?
(f) Another suggestion is to use Organ inventory with a defined value set to remove having to make assumptions about sex status altogether. Do you agree? I agree.

4. Ballot content and process

(a) The R5 ballot package was posted on Sep 16 but the correct Gender identity value set was not posted until Sep29
(b) With the submission deadline of Oct 7 for the community and Oct 13 for HL7 Canada, we think the timing was too tight for such a complex ballot
(c) If HL7 wants community participation it needs to make a greater effort to make the ballot content and process easy to understand and follow; currently they are too complicated for non-technical people to take part meaningfully
(d) If there is a vote to this aspect we propose to vote NEGATIVE as well. Do you agree? I agree.

Francis on behalf of the SGWG member who was not able to post her comments

Thank you for the fulsome summary, Francis -- and thank you to your whole team for their excellent work on this file.

I have a concern related to the proposed negative vote related to your point #2. My understanding of the SFCU is that it importantly separates sex from gender; and in this way, I believe, it is an important step. My sense is that there will be an important role for SFCU in supporting computable care guidelines (CCG) and other important digital health innovations that will rely on unambiguously knowing the biological sex of the subject of care. I fear that we are basing our proposed response related to SFCU on a concern that it is "political" to frame the value set as it has been proposed. This should not be political. I think we may want, instead, to frame our response in the context of this being a patient safety and quality of care issue. An accepted definition for cisnormativity is the sometime offensive "assumption that all human beings are cisgender, i.e. have a gender identity which matches their biological sex". But we're not talking about gender, here. As a practical matter, one's biological sex does match their biological sex -- and we want the SFCU to reflect this apolitical data element as simply as possible. I believe the proposed value set is mercifully simple -- and for this reason I would advocate for us voting AFFIRMATIVE.

RE: #3, I feel like your point about consistency across HL7v2, CDA and FHIR is a really good one. But, as above, I believe we need to be apolitical regarding SFCU and so don't find the arguments that this is discriminatory to be persuasive. I would support an AFFIRMATIVE vote for SFCU value sets as they are described in your point #3.

Your point #4 is well taken. I lament that I've not been able to continue to regularly attend the SGWG meetings and so have surely "fallen behind", compared to other attendees. That said, as is true for many, I believe it would been helpful to have a bit more time with the full value set content and to have been able to further discuss within the working group or on this forum.

Happy Thanksgiving, all,
Derek

Thank you UVic Team. I do support all your points but not the use of 'female gender' and 'male gender' as always.

Thank you foe this summary Francis. I support all of your comments and suggested votes as above.

Lindsay

Folks, the UVic team has reviewed the Gender Harmony Ballot (hl7.org/xprod/ig/uv/gender-harmony/2022Sep/index.html) and identified what we think are the top 4 issues. Please reply to this posting to share your thoughts. This ballot is time sensitive. The deadline for posting community comments is Oct7:

1. Gender identity

• In R5 ballot the gender-identity value set is shown in terminology section 4.4.1.478 (www.hl7.org/fhir/2022Sep/valueset-gender-identity.html)
• The value set is listed in section 4.4.1.478.1 Content Logical Definition, it includes all the codes in 2.16.840.1.113762.1.4.1021.106 and Unknown
• You need a VSAC login-id to access the codes in 2.16.840.1.113762.1.4.1021.106; the only options there are “Unknown, Identifies as female gender, Identifies as male gender,” which we think are insufficient
• An alternative set of options listed in FHIR CI-Build (build.fhir.org/valueset-gender-identity.html) include “Identifies as female gender, Identifies as male gender, Identifies as nonbinary gender, Unknown.”
• We believe this alternative set of options is acceptable as a basic minimum set of gender identity options because the systems where this set of options will be used may also allow one to add further options as needed. So we propose to vote AFFIRMATIVE for this section. Do you agree?

2. Sex for clinical use (SFCU)

• In R5 ballot the sex-for-clinical-use value set is listed in terminology section 4.4.1.24 (hl7.org/fhir/2022SEP/valueset-sex-for-clinical-use.html)
• For the value set, the codes listed in section 4.4.1.24.2 are “female, male, specified, unknown” with corresponding display values “Female sex for clinical use, Male sex for clinical use, Specified sex for clinical use, Unknown,” respectively
• Some SGWG members felt strongly that this data element is discriminatory that promotes cisnormativity, implying anything outside of female and male need to be somehow specified; so we propose to vote NEGATIVE for this section. Do you agree?
• As an alternative, we suggest to change the label to Parameters for clinical use and separate it from Sex altogether, since other non-sex related clincal conditions may require special/specific considerations as well. Do you agree?
• Another suggestion is to use Organ inventory with a defined value set to remove having to make assumptions about sex status altogether. Do you agree?

3. Consistency between FHIR, V2.9.1 and CDA value sets

• In HL7 V2.9.1 CH02C_Tables PDF, Table 0821 on p780 for genderIdentity shows display names of “Female, Male, Nonbinary, Unknown” and values “446141000124107, 446151000124109, 3379100008710” which are the SNOMED CT conceptIds for “Identifies as female gender, Identifies as male gender, Identifies as nonbinary gender.”
• We think the display names in Table 0821 should be the same as the SNOMED CT descriptions with the words “Identifies as” and “gender” included to eliminate any ambiguity that they may refer to male and female sex. Do you agree?
• In HL7 V2.9.1 CH02C_Tables PDF, Table 0828 on p788 for Sex for clinical use shows values “female, male, specified” with display names of “Female sex for clinical use, Male sex for clinical use, Specified sex for clinical use.”
• Some SGWG members felt sex for clinical use and its value sets are discriminatory that promotes cisnormativity, so we propose to vote NEGATIVE for this section. Do you agree?
• As an alternative, we suggest to change the label to Parameters for clinical use and separate it from Sex altogether, since other non-sex related clincal conditions may require special/specific considerations as well. Do you agree?
• Another suggestion is to use Organ inventory with a defined value set to remove having to make assumptions about sex status altogether. Do you agree?

4. Ballot content and process

• The R5 ballot package was posted on Sep 16 but the correct Gender identity value set was not posted until Sep29
• With the submission deadline of Oct 7 for the community and Oct 13 for HL7 Canada, we think the timing was too tight for such a complex ballot
• If HL7 wants community participation it needs to make a greater effort to make the ballot content and process easy to understand and follow; currently they are too complicated for non-technical people to take part meaningfully
• If there is a vote to this aspect we propose to vote NEGATIVE as well. Do you agree?

Regards
Francis Lau, Kelly Davison, Karen Courtney, Aaron Devor, Roz Queen
University of Victoria