Caregiver reference guides 

The final caregiver reference guides are now on the committee page. The group discussed where the guides could reach families and clinicians. 

Dissemination ideas 

  • Transition patients moving from pediatric to adult care.

  • New-onset binders given to newly diagnosed families.

  • Patients preparing for surgery.

  • Primary care providers, who often lack access to diabetes educators.

  • American Academy of Pediatrics, Family Voices

  • C.S. Mott Children's Hospital has two newsletters, one pediatric and one adult. Amy Ohmer will share the guides with the Mott team. Inclusion is not guaranteed because of several layers of approval. Newsletter can be found here  

Committee priorities: 2026–2028 

A main priority for this term is supporting the 4T program as it expands beyond Stanford. 4T, together with a U34 planning grant, will support remote patient monitoring (RPM) and will grow from Stanford to 15 additional pediatric centers. The committee can contribute ideas to the project and may be asked to review 4T documents. 

Other focus areas continue from earlier in 2026: 

  • Sharing the caregiver reference guides.

  • T1D screening and teplizumab education.

  • Resources for T1D in school and the workplace.

  • Low-burden ways to gather PwD feedback across the Collaborative. Ideas raised in July included advisory councils, guest attendance, registry polls, and working with the HEAL Committee.

 

T1D screening and teplizumab education 

  • The group sees a need for a decision-support resource for families considering screening and teplizumab. The key message is that whatever decision a family makes is the right one for them.

  • The resource should explain why a family might choose screening or teplizumab, and why they might not.

  • It could include a parent guide, and should present each decision as valid.

  • Stephanie's clinical therapist at Cook Children's is developing a resource on this topic. Stephanie will share it when it is complete.

  • Related T1DX-QI work: see the Early Staging T1D project. 

T1D in school and workplace settings 

  • Good resources already exist from the ADA and Breakthrough T1D. Rather than create new content, the group suggested a one-page quick reference that points people to those resources. 

Trusting closed-loop systems 

  • The conversation turned to how people learn to trust automated insulin delivery. This applies both to newly diagnosed people and to long-time pump users adapting to new technology.

  • Using activity mode effectively.

  • Letting go of striving for a perfection that doesn't exist.

  • Reducing mental load by trusting the system.

  • Asking what is driving a behavior, such as frequent overrides, rather than only correcting it.

  • Reducing burnout.

  • This would make a good commentary or breakout session topic for Friends for Life. 

Action items 

  • Amy Ohmer: Share the caregiver reference guides with the C.S. Mott pediatric and adult newsletter teams.

  • Stephanie Ogburn: Share the screening and teplizumab decision-support resource from Cook Children's when it is complete.

  • T1DX-QI team: Contact AAP and Family Voices about sharing the reference guides.

  • T1DX-QI team: Bring committee members into 4T document review and idea generation as the expansion gets underway.

  • T1DX-QI team: Explore a Friends for Life breakout session on trusting closed-loop systems.