T1D Monitoring Project meeting minutes 3/22/24

T1D Screening and Monitoring Project meeting 3/22/24 2:00 PM ET

Participants: Dr. Carla Demeterco-Berggren; Dr. Laura Jacobsen; Dr. Osagie Ebekozien; Ann Mungmode; Emma Ospelt, Don Buckingham

Minutes:

Welcome:

• Sanofi has officially approved the 5 centers for the expansion of the project, although the funding will be separate from JDRF, the objectives will align
• Still have an opportunity for the seven teams to come together to learn
• Nicole from our team will shortly share a new SOW from Sanofi project
  • Carla and Laura have agreed to support Sanofi project as co-PIs leading the work

Quality Improvement Updates:

• Rady updates: Main issue discovered to be siblings of patients are not patients, need to create a way to support families/siblings in having screening, know they completed and results, and receive their consent
  • Established partnership with BDC ASK program, and started with 25 kids
  • Developed a flyer with screening information and to email if they are interested,
  • Starting on March 1^st, have 2 days a week, ramping up, asking people to agree to join the ASK program
  • 3 kids screened so far, and two faculty interested in joining as the program scales
  • ASK program emails results to Rady; can sometimes take 2-3 weeks to receive
  • Creating an “early diabetes” clinic
  • Screening for celiac too
  • Need more communication outside of flyer-myChart
  • Possibly discuss anxiety

• Florida updates:
  • Current process- clinical research coordinator to come to diabetes clinic to talk with families and ask about screening for family members- two examples were people already in their EMR system
  • Reimbursement piece not ready to rapidly scale up
  • Merge TrialNet process with clinical care-not in medical record
  • Possibly need referrals for people who are not their patients
  • Relatives not there who want to discuss-gave name and email and website info
  • Order clinically-but don’t want them to get a bill
  • Need a safety net fund if a family does get charged-or to apply to JDRF for additional funds to cover this
  • After screening-expand this safety net fund to try with telemed visits for counseling
  • Make a “new clinic” and referral code for ‘T1D At-Risk’
  • Psychologist available who is interested-apply for grant to see if she can study it
    • Laura provides initial screening and then the psychologist can talk about follow up and more specifics (therapy)
  • Take local TrialNet autoantibody positive people-take data with their permission and put into EMR- roadblocks??

• Next steps for QI:
  • Suggestion to do a Failure Mode and Effects Analysis (FMEA) to identify potential problems or failures we predict as we start up new processes
    • This can help us with thinking through how T1DX-QI can support 30 centers to start up screening and monitoring processes in the next year
  • QI documentation in QI Portal-creating a new T1D Screening and Monitoring measure
    • For now, teams will complete RAIL template to document activities and PDSA cycles
  • Also recommendation to continuously update process maps to capture changes/evolution in screening and monitoring process that teams are creating

Project Analyses Updates:

• Updates
  • Shared Qualtrics survey
  • IRB is updated
• Consolidated Framework for Implementation Research (CFIR) model and focus groups
  • We will like to host multiple touchpoints with full care teams to capture information about process implementation along each of the five CFIR constructs:
    • Intervention characteristics
    • Outer setting
    • Inner setting
    • Characteristics of individuals
    • Process of implementation
  • Both teams are already identifying areas in these constructs:
    • e., insurance and payment barriers (outer setting)
    • Scaling up and finding internal resources to support sustainability (inner setting)
  • Aspects captured here can help answer the question “how to implement a new process for screening and monitoring patients at risk for T1D”
  • More details coming soon to begin scheduling these calls

Other Updates:

• Screening and monitoring paper
  • Emma can share paper outline and Carla can lead writing
    • Results from ADA data
    • Results from implementation/QI process at Rady/University of Florida

Meeting Recording: https://t1dexchangeinc-my.sharepoint.com/:v:/g/personal/amungmode_t1dexchange_org/EWaWUeWN-fxOi-VkxPpXjjgBkDDKw60-dGfmGLQoe4hhAg?referrer=Teams.TEAMS-ELECTRON&referrerScenario=MeetingChicletGetLink.view.view