Infoway Sex-Gender Working Group meeting on June 9, 2020 12 ET / 9 PT

Agenda, notes and slide deck are now posted. Please note that I will add any responses to the questions to the notes document, and also that the there are some PPT-->PDF conversion problems with Fenway's deck. So please anticipate new versions of each in the coming days.

Fenway's Slide Deck
infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/sex-gender-presentations

Meeting Slide Deck and Notes
infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/sex-gender-meetings

Greetings folks, here are the notes from Tuesday's session.

1. Welcome

2. Presentation – Fenway Health – Collecting SOGI Data in EHRs

Alex provided an overview of the work that Fenway does, which includes education, training and health care. Free resources, including videos and pamphlets are available at www.lgbthealtheducation.org. Each population in the LGBTQ2SIA+ has different challenges, different needs. Inclusive, accurate and affirming language is important. There is a glossary of terms available on the site. People must self-identify, and clinicians must use the language that patients self-identify with. Fenway uses a minority stress framework. External stigma and stressors can be, and are, internalized. Interpersonal stigma, intrapersonal stigma, structural stigma, insensitive care. If you’re not counted, then you don’t count. Clinical education and practices are important. Sensitive, effective communication, a welcoming milieu and appropriate representation in the in the EHR with appropriate policies are important. Need frontline staff, registration and intake, to be sources of this data. Not asking ca crease harm by missing important opportunities for screening. Some staff may need extra coaching and reassurance. Appeal to their sense professionalism. Requires continuous improvement. Workflow demonstration videos are available online. Proper use of pronouns is critical for creating an inclusive and affirming environment. Mistakes can lead to patients becoming upset because of previous harms. Apologize and use as an opportunity for growth. Don’t make any assumptions. Just respect the manner in which they identify. Avoid outdated, medicalizing terms. Politely direct colleagues.

Chris: Fenway has 50+ years of experience providing care to folks, and has been using EHRs since 1999. Discrete sex and gender data elements were a game-changer. You don’t need to be LGBT to care for LGBT people. For training, organizations tend to just focus on clinicians. All staff should be trained and should be involved in changing practice. Clerks, billing, etc. It’s also good to have a physician champion. There is a lot of privacy protection built into EHRs. Interoperability is currently an issue. Patient portals where patients can enter data are important, or patients can register at the site via kiosks. Do not make assumptions. Key fields include administrative name, administrative/legal sex. Fenway uses asterisks to signal discordance for billing. Don’t let perfect be the enemy of good. Using the terms if preferred is inappropriate; a name is a name, a pronoun is a pronoun. Need to expand FHIR for this. Ask for parent and/or guardian information, not mother and father, since is heteronormative. Is culturally safer and more affirming. Normalize data collection in workflows. Registration is a time and opportunity to review and update this information. Some people might not feel comfortable disclosing right away, so repeated opportunities are required on every encounter. If not, can lead to clinical assumptions. For pediatric clients, have the forms available for kids – can start early. Accommodate for the increased independence that comes with adolescence. People from other cultures may not understand the English terms, or may not want to disclose; putting anything down on paper might put them at risk/might seem like a barrier to care. Workflows for billing data help with consistency.

EHRs are heavily audited – you can know who has accessed, what they have looked at, etc. Paper is prone to breaches in confidentiality. Having an approach to these situations worked out before hand is important. Data persistence is important to avoid clinicians asking (and patients have to respond to) questions multiple times. Interdepartmental communication workflows can help to address those gaps. Fenway uses colour codes in the patient photo field as a visual marker, which helps to eliminate clinical assumptions. THP- trans health program.
Use different intake forms for different folks. History, goals of care, multilab forms, etc. Can build guidance right into the EHR. Organ inventory, for instance – its like a review of systems that can be recorded automatically to the problems list. Anatomical inventory makes a much more accurate picture, especially for screening. We are moving toward precision medicine. Clinical decision support. Systems are not yet designed to identify needs. More fields brings up additional questions. Sexual orientation and gender identity are recommend to be captured.

3. Discussion

Two-spirited people should be included.

4. Other Items

Kelly to review chat thread for unanswered questions and will post them to the forum.

5. Adjournment

Good morning Sex-Gender WG/Community members,

A gentle reminder about tomorrow's meeting at 12 ET / 9 PT. The Fenway Institute is planned to present.

Agenda:

1. Welcome
2. Collecting SOGI Data in EHRs
3. Group Discussion
4. Other Items
5. Adjournment

Meeting details can be found on our events calendar. infocentral.infoway-inforoute.ca/en/news-events/event-calendar/icalrepeat.detail/2020/06/09/3537/-/sex-gender-working-group-meeting

Good morning,

A gentle reminder about the Infoway Sex-Gender Working Group meeting on June 9, 2020 12 ET / 9 PT. The Fenway Institute is planned to present. I will post another reminder on Monday the 8th.

Draft agenda:

1. Welcome
2. Collecting SOGI Data in EHRs
3. Group Discussion
4. Other Items
5. Adjournment

Meeting details can be found on our events calendar. infocentral.infoway-inforoute.ca/en/news-events/event-calendar/icalrepeat.detail/2020/06/09/3537/-/sex-gender-working-group-meeting