Sex-Gender Stakeholder Consultation Session 1 – Summary Notes

Update on prior conversations...

1. Shortly after I joined the S&GWG you may recall I asked whether Federal entities who issue unique health identifiers for internal populations (ee's, inmates, etc.) were included in the study's environmental scan and it was noted they were not. We took this off-line and post-webinar it was resolved that the WG simply take this under advisement and include Federal entities in the Phase II plan, to ensure they are looped into next steps.

For clarity therefore, I have uploaded the PID3 spec from the Manitoba Cancer Staging Initiative (MCSII) which lists the 6 entities I was referring to:

• The 2012.04 - CancerCare Manitoba MCSII ePath Spec (PID3.ALT.IDs) from the Manitoba Cancer Staging Information Initiative (MCSII) (2009-12).

2. Additionally, in many of our calls there is discussion about the need for 'free text' on forms and in EMRs to permit one-off or customized responses to S&G questions. Free text has its place...but it can also have drawbacks to 'structured' text. Typically free text fields append structured answers if/as needed.

I realized when I was working with Kelly & Roz on some 'grey literature' submissions that I had something to share with the group about free text based on my 0000's of hours of testing during the MCSII. So I have also uploaded that document for your reference as well, specifically:

• The 2014 NAACCR Standards for Cancer Registries Volume V: Pathology Laboratory Electronic Reporting Supplement Version 1 , and refer you to sections 4.1, 4.2 & 4.3 which cover some of the data entry issues I encountered during my QA/QC activities in years 2 & 3 of the project, when I worked directly with our lab partners to overcome HL7 issues in order to pass conformance testing.

If you have questions about either/each of these docuemnts, or my QA/QC testing background, please post them here or contact me privately.

Andrea JCL Downey PMP

Thank you Marcy and Francis for the great session and detailed notes. I appreciated being part of a sessions that was so vibrant and engaging. The questions and comments (spoken and in the chat) were thoughtful and meaningful and you can feel the passion and importance of the work at the meetings.

In the notes, a question was raised about what the ONC is doing in this area and I found this on-line: www.healthit.gov/isa/section/sex-birth-sexual-orientation-and-gender-identity and thought I would share it here. You can see that a variety of value set and code systems are employed in this area.

At the HL7 International call yesterday (May 4) there was some additional conversation about gender indentity and HL7 will be looking for some feedback on this. The document can be found here: docs.google.com/document/d/1myXcpxZRpbSufrpMG76ZDl_5jBWrEGzmmsvdUtmsZIM/edit

The notes from that meeting can be found here: confluence.hl7.org/display/VOC/2020-05-04+Gender+Harmony+Meeting+Agenda+and+Notes

There was discussion about making the content dynamic and extensible and I think that these are good ideas.

It was noted that SNOMED International is also interested in this work here in Canada and at HL7 International.

I agree with the comments in the notes about the role of EHR/EMR and how this information is used and am confident that we will find the way to reflect this important information appropriately together.

I did provide a bit of an update on this work to the HL7 Canada community at their meeting this afternoon (May 5) and there was a lot of interest and support for this work and questions raised about implementation timelines and the use of the work as part of the CA Core FHIR baseline. I am confident that the HL7 Canada members will further spread the word about this work and guide us as well.

I look forward seeing the comments of others and the next meetings.

Thank you

Regards,

Andrea

Hi Everyone,

Thanks to everyone who was able to attend and generate a wonderful discussion at our first consultation session on April 28th.
In follow-up to the session we have a few next steps:

1) We would like to hear from the attendees on how the session went, by completing a short, 3-question survey: www.surveymonkey.ca/r/9FZNHYT

2) If you could review the summary notes: infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/sgwg-planning-project/3305-consultation-session-1-policy-28april2020-summary-notes-3-0.

3) With over 45 people in attendance we may not have been able to hear from all of you, so want to encourage attendees, as well as those who weren't able to attend the opportunity to provide further insights. You can add your comments directly into the summary notes document by using track changes, or in the slide deck (infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/sgwg-planning-project/3288-consultation-session-1-apr28-2020), or by sending them in the body of your email. If could please send your feedback to Marcy (This email address is being protected from spambots. You need JavaScript enabled to view it.) or Francis (This email address is being protected from spambots. You need JavaScript enabled to view it.) by May 25th.

4) The next Infoway working group meeting is scheduled for May 12th 12 pm ET/ 9am PT.

5) The next Consultation Session will be on May 26th at 12pm ET/ 9am PT, and will focus on practice. We will be sending you information on this session about a week prior to the date.

Thanks to all of you for your involvement in this project,

On behalf of the Sex and Gender CIHR Planning Project:
Francis Lau, Professor and Lead Researcher
Marcy Antonio, PhD Candidate and Research Coordinator