July 17, 2024

T1DX-QI PWD Advisory Committee Meeting, Wednesday July 17, 2024, from 11:00-12:00 pm (EST)

In attendance: Craig Bobik, Emily Coppedge, Emily DeWit, Naomi Garlick, Holly Hardison, Katie Hester, Amy Ohmer, Nicole Rioles, Steven Sanchez, Britaney Spartz, Marissa Town and Stephanie Wurtz

• Welcome to new member, Naomi Garlick who lives with type 1 and receives care at the NYU, which participates in the Collaborative
• Charter – link for review for all
• Goals for 2024/2025
  • Language that supports PWD
  • Info sheets/trainings
    • Make 1 page sheet so that PWD/families/patients don’t have to “explain” diabetes.
    • Template- getting Type 1 Right (Stephanie will share)
    • ADA has a directory of psychologists
    • Realities of T1D for November Diabetes Month
    • Talk- November learning session about “setting expectations”
    • Chart: diagram expectation vs reality
    • New: add as followers (to show the reality of highs and lows)
    • Peer support- normalizing
    • Tool sheet of ideas
    • Help people stay on resilience path
    • List of social media that is uplifting and peer to peer
    • Asking questions for families who aren’t doing well- what do they need? What can we learn to better support them?
  • Action items
    • Work on a letter- what you want to tell providers about diabetes and review (Jeniece has a template)
    • Any ideas of successful ideas to engage community
      • Get Diabetes Right
      • http://www.getdiabetesright.org/uploads/PDFs/GDR%20-%20Diabetes%20Etiquette.pdf
      • http://www.getdiabetesright.org/uploads/PDFs/14-GDR-0601-Facts-WHITE.pdf
      • http://www.getdiabetesright.org/uploads/PDFs/GDR%20-%2010%20Things.pdf
      • http://www.getdiabetesright.org/uploads/PDFs/GDR%20-%20Etiquette%20for%20Parents.pdf

• • • We can send newsletter out qtly from the Committee to the Collaborative so that they hear our voices

• • • Next Meeting: October 9^th from 11 am – 12 pm

Link to Recording: https://us02web.zoom.us/rec/share/FA0FAY54wvp9ebUJlQwHKnoq2_CvARNfNfv5nLSvKK3YOq4DM4vujoULR9NthTk.ykF1zmeP_DBAP1YI

Passcode: U0=W&ZpC