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Amy Ohmer is the Director of the International Children’s Advisory Network (iCAN). She is a member of the T1D Exchange Family Advisory Network, the American Board of Medical Specialties Stakeholder Council, and the Diabetes Partners in Action Coalition (DPAC).
In addition, Ohmer serves as an Advisory Board Member and Family Mentor for Mott Children’s Hospital Patient and Family Centered Care and as a Family Mentor for JDRF and the American Diabetes Association.
Ohmer is the creator of Naturally Sweet Sisters, where she shares her family’s experience with T1D. She is an advisor, speaker, and consultant with a passion for helping others to navigate life with chronic disease.
Interview with Amy Ohmer
In this interview, Ohmer discusses her expertise in supporting people with type 1 diabetes (T1D) and working to improve patient care through the T1D Exchange Quality Improvement Collaborative (T1DX-QI).
The T1DX-QI was established in 2016 — with the support of The Leona M. and Harry B. Helmsley Charitable Trust — in an effort to refine best practices and improve daily life for people with type 1 diabetes (T1D). Growth has been tremendous, with 54 endocrine clinics from across the U.S. participating in the Collaborative.
Fueled by top leaders in diabetes care, the T1DX-QI has become an engine of innovation and inspiration. By engaging with the shared, data-driven, and systematic methods of the T1DX-QI, clinics have seen unprecedented success in their approach to diabetes management.
With members working closely together to identify gaps in care, discover and refine best practices, and share research — the process has become knowledge-sharing at its very best. While collated data gives clinics a clear sense of “where they are,” it also demonstrates “where they can be” by applying shared, evidence-based methods for improving care.
The greatest joy comes from helping others
“Both of my girls live with T1D,” said Ohmer, whose youngest daughter, Olivia, was diagnosed in 2006 at age 3, followed by Reece, in 2009 at age 8. “It was so unusual at the time to have two children with T1D — I had to talk about it and try to make it better.”
While Ohmer recognizes that T1D may be different for different people, she also appreciates the shared, common threads in the collective experience. And Ohmer — who is a ray of sunshine in her own right — didn’t stop her positive efforts within her own family.
“After Reece’s diagnosis, I knew I had to make a difference. Our family’s experience prompted me into the world of advocacy,” reflected Ohmer.
Please tell us about your involvement with the International Children’s Advisory Network?
“The International Children’s Advisory Network, or iCAN, was founded by a pediatrician, Charlie Thompson,” explained Ohmer, who serves as the Director of iCan Research. “He had an idea for an organization that would provide children with a platform to share their voices about life with chronic disease.”
iCAN launched in 2014, creating opportunities for widespread participation such as: public speaking, survey creation, participation in clinical trials, and providing valuable feedback to spur institutional change.
“With iCAN, kids are given the opportunity to share their expert opinions, and their input is taken to heart. Kids teaching kids is a vital part of what we do at iCAN — along with kids teaching adults,” said Ohmer.
“We give an ‘iCAN Seal of Approval’ when an organization makes changes based on a child’s recommendations,” said Ohmer. This allows the institution to highlight that information was “peer-reviewed,” or approved by other kids. She went on to explain that iCAN isn’t just about T1D, the program is inclusive of all kids and all health conditions.
Ohmer, who just wrapped up an international iCAN summit in Lyon, France, spoke about the power of bringing kids together from four different continents. “We had children from Uganda and their shared experiences and perspectives were amazing. Everyone learned so much from one another.”
How did you become involved with the T1DX-QI?
“I was one of the first parent participants in the Collaborative, with involvement stretching back to 2013 or 2014. We met at Cincinnati Children’s Hospital in a workshop environment — and as a group, we started with a blank slate,” explained Ohmer.
“At the beginning, everything was institution-specific with no cross sharing,” said Ohmer. “It quickly became apparent that we could make a bigger difference by identifying the problems and sharing solutions collectively. There was a wealth of data and ideology that could be flushed out. In general, we knew that T1D care could be improved across all healthcare systems. That was the initial goal.”
Although clinics were making changes, they didn’t have a repository of national data or insights to drive changes in practice models. As a group, they spearheaded a mission to utilize siloed T1D data and begin to share it widely. Ohmer explained that T1DX-QI continues to make a tremendous difference. “We’re not just looking at A1C results, we’re thinking about time-in-range, health inequities, and creative solutions for care issues.”
On the local side, Ohmer serves as a parent for the T1DX-QI site in Michigan. She is a family advocate and advisor in the creation and implementation of QI processes for C.S. Mott Children’s Hospital Pediatric Endocrinology Clinic at the University of Michigan Health System.
Let’s talk about diabetes tech and parenting
As we wrapped up the interview, Ohmer and I discussed parenting kids with T1D prior to CGM and other technology advancements. “We had baby monitors all over the house, it was a desperate attempt to improve safety and hear the girls. While we were early adopters of CGM technology — and willing to try anything to get a scrap of data — the first systems weren’t what we have today.”
“I didn’t feel comfortable putting a toddler to bed who was around 90-100 mg/dL,” explained Ohmer. “We would think, ‘Is that enough juice to get her through the night?’ It was like driving a car at night with no windshield wipers in pouring rain — and your headlights aren’t working.”
The reality was interrupted sleep, at best. Ohmer reflected on her night time routine, “We honestly didn’t sleep through the night until the girls had the Dexcom G5.” Having the ability to trust glucose data and receive alerts added a necessary layer of information allowing Ohmer to take a deep breath.
“We continue to adjust and adapt as a family. The girls are in college, and I truly believe the perfect solution is what works best for an individual. The girls let us know about areas in which they need more support. This is our lives — and it’s always been this way.”
While having two children with diabetes is challenging, Ohmer’s hallmark positivity shines through as she reminds, “Having a sibling with a shared experience is powerful. I don’t know what we would have been like without being touched by T1D, but we are so close as a family. I see that as the silver lining.”
Outside of her dedication to helping others, Ohmer says her true joy is spending time with her family. She enjoys shopping with her girls and going on family oceanside vacations — particularly to the Outer Banks of North Carolina, where they spend time together relaxing and watching the sunset.
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