May 12, 2020 Sex-Gender Working Group agenda and meeting notes are now posted to documents folder, and are also included below:
https://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
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