Good morning folks. January 14th meeting notes are posted below and the document is available at the following link:
https://infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/sex-gender-meetings
Sex and Gender Working Group
January 14, 2020
Via Teleconference
Agenda:
1 Welcome
2 Presentation – Sex and Gender Definitions
3 Group Discussion
4 Other Items
5 Adjournment
6 Action Items
Participants:
Francis Lau
Marcy Antonio
Kiffer Card
Kelly Davison
Andrea MacLean
Dan Simic
Finnie Flores
Sisira De Sliva
Robin Laird
Adriana Moryski
Gillian Kerr
Dorell Metcalf
Marcy Antonio
Nathan Lachowski
Andrea Mah
Mukesh Kasyap
Harshani Debere
Prossolatos
Hanine
JM
Joe Walsh
Karen Luyendyk
Abdullah Khan
Aaron Devor
Shelley Weslosky
Mary Byrnes
Beth Clarke
Katie Brysk
Keltie Jamieson
Roz Queen
Lisa Mackenzie
Fariba Behzadi
Lindsay McNeil
Marie Train
Lorraine Grieves
Lisa Mroske
Notes:
1. Welcome
Roundtable introduction.
2. Presentation – Review of Sex-Gender Definitions
Francis provided a detailed review of existing definitions in Canada, the U.S. and internationally; based in part environmental scan conducted by Infoway.
Definitions are evolving.
3. Group Discussion
Sex assigned at birth and sex at birth are the same thing. Gender identification and lived gender are different concepts, and someone may not feel safe to outwardly live or express their gender ID. Pronouns are a key issue; are incredibly important. In terms of recorded gender – Ontario Human Rights legislation states that a person does not have their personal ID changed in order to be respected and accepted.
Sex for clinical use is context-dependent. Chromosomal sex and sex at birth also have variation. Hormonal status can be an issue. Clinical markers and lab reference ranges can change based on this data leading to what may be interpreted as abnormal results (when they are not abnormal). Some people do not even discover that they have a chromosomal sex different than what they expected until later in life.
Language becomes very important in providing affirmative care. Organ status: rather than talking about a “female reproductive system,” using language like “having a uterus” is more appropriate. Terms like “hermaphrodite” are offensive and need be retired (i.e. DICOM).
Being intersex is very different than being trans; couching this diversity in a term like “D” does not support the clinical cases for diverse discrete data elements reflecting diversity, and impacts all systems. Capturing specific data about diversity is very important. There is currently a lack of detailed data – this is a BIG problem.
Sexual orientation may not be as prudent to this discussion as is not as important as sex and gender. Accurate gender pronouns are important for providing care.
Need to develop ways to understand gender in the context of statistical analysis, data aggregation and service provision as different services use different terms. Terminology/definitions develop/change rapidly. Specifications ought to account for this change. Asking for tools to support data aggregation depending on sample size, like ICD.
American/Canadian interaction around vendors. ONC ISA/SNOMED CT is used in US – international or an extension? Francis thinks a mix and will follow up.
Female to male and male to female terms should not be used for gender identity.
HL7 Gender Harmony project is close to the mark. Look to their work for accurate information. “Preferred pronoun” should just be personal pronoun or pronoun. “D” for gender diversity is not appropriate. Should be trans, non-binary, etc.
Sex a birth – problematic for people who are intersex who may not discover that until they are older and trying to reproduce. 1% of people are born intersex. Need to consult with intersex community.
Term “indeterminate” may be inappropriate.
Need to consider that this language will change over time and need to think about how the ontologie(s) will adapt.
4. Other Items
5. Action items
• Francis to look into SNOMED CT version for Sex/Gender used by the U.S. ONC.
• Presentations and notes to be posted to the Canada Health Infoway discussion forum.
• Next meeting is February 11, 2020.
• Call for agenda items will be sent about a week before.
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