Infoway Sex-Gender Working Group meeting on May 12, 2020 at 9am PT / 12pm ET

May 12, 2020 Sex-Gender Working Group agenda and meeting notes are now posted to documents folder, and are also included below: infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/sex-gender-meetings

1. Welcome

2. Presentation – Trans Care BC – Collection of Sex and Gender Data in the HER: A Clinical Use Case Approach

Beth Clark and Lindsay MacNeil provided an overview, with recommendations, about best practices that meet the data requirements to satisfy clinical use cases, analytics and administrative use cases while protecting patient privacy. Emphasis was placed on the need for systems to support clinical practice environments that are affirming and culturally competent.

3. Discussion

There is an ethical motivation to address disparities is health. EHR data models have implications for bloodwork, billing, insurance, etc.; privacy and rights; transcultural competencies. Mislabeling/misgender leads to harm and risk of violence; leads to avoidance of care. There is a disconnection between what providers and patients think is appropriate. Staff need training. Recommendations have been around for 10 years, but not implemented - getting there now. Important revisions to human rights and other legislation in Canada, in US, etc. setting stage to enable these changes. Design should limit risk of misgendering/deadnaming/stigma. Were not confident in existing models, so applied clinical use cases to test and refine recommendations. Different use cases. Physicians to specify desired reference ranges, hormone medication dates. Presence or absence of organs to drive screening. Anatomic inventory. ID is never required for analytics. Use PHN. Data stewards need training. Need alternative billing models because are gender based. EMPIs and historic data - are separate records necessary? Need to document WHY collecting data. Patient-entered data is preferred. Protect privacy over data collection. Provide information about how people can control their data. Guidance notes. Culturally safe care is biggest challenge. Systems must support training and vice versa. Legal liability can be one motivator. Data models must be inclusive, otherwise they are exclusive.

4. Other Items

Review of grey literature underway by Roz, Kelly and team. Will post request to forum but seeking guiding resources.
CIHR Stakeholder Consultation Session topics and schedule reviewed. WG schedule and presentations reviewed.

5. Adjournment

Greetings Folks,

Trans Care BC's presentation from yesterday's meeting has now been posted to the community's documentation folder under Presentations: infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/sex-gender-presentations/3310-sex-and-gender-may-12-presentation-trans-care-bc-beth-clark-and-lindsay-macneil

The slide deck for the presentation is available in the documents folder under Meeting Information: infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/sex-gender-meetings/3311-2020-05-12-meeting-slide-deck

Meeting notes will be posted later this week, and a message sent out via this forum thread. Thank you all for your ongoing participation in this important work.

Happy National Nurses Week!

Good morning,

Tomorrow's Infoway Sex-Gender Working Group meeting will be held at 12 ET / 9 PT.

Agenda:

1. Welcome
2. Trans Care BC Update on MOH SG Work
3. Group Discussion
4. Grey Literature Review - request for resources
5. Other Items
6. Adjournment

Meeting details can be found on our events calendar. infocentral.infoway-inforoute.ca/en/news-events/event-calendar/icalrepeat.detail/2020/05/12/3536/-/sex-gender-working-group-meeting

See you all tomorrow.

Good morning folks,

A gentle reminder about this coming Tuesday's Sex-Gender Working Group meeting hosted by Canada Health Infoway.

Draft Agenda:

1. Welcome
2. Trans Care BC Update on MOH SG Work
3. Group Discussion
4. Other Items
4. Adjournment

Meeting details can be found on our events calendar. infocentral.infoway-inforoute.ca/en/news-events/event-calendar/icalrepeat.detail/2020/05/12/3536/-/sex-gender-working-group-meeting

I will post another reminder with a final agenda on Monday. In the meantime, please stay safe and stay wonderful.