Young People with Diabetes Find Support Through Collaboration

-Shahd Husein

During a visit to her endocrinologist, a young Olivia Ohmer started to feel hopeless. She’d been living with type 1 diabetes since she was three years old, but could not seem to understand why her opinions were going unheard in the clinic.

“I wish these doctors would listen to me,” she told her mother, Amy. “I’ve lived with this disease longer than they’ve even been in medical school.”

Amy felt moved. She watched Olivia manage her condition for years, and knew her daughter intimately understood the ins and outs of type 1 diabetes, including the daily challenge of regulating her blood sugar levels. Olivia was longing for a platform to share her voice, and Amy vowed to provide her with opportunities to do just that.  

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Years later, Olivia’s older sister, Reece, was also diagnosed with type 1 diabetes, and the sisters began attending appointments at their clinic together. One particularly stressful session left them wondering how they could better communicate both their accomplishments and struggles to their doctor, given that it was difficult to recall three months of diabetes management in between each visit.

“What would you tell somebody your age to do?” Amy asked.

Determined, Reece and Olivia put their heads together to develop an online form for kids and teens to complete prior to their appointments. Kids could highlight what went well in the three months leading up to their appointments, areas that they hoped to improve, and short and long-term goals. The idea was to share these notes with doctors during clinic visits.

As her children worked away at this quality improvement endeavor, Amy watched in awe, feeling inspired to help others in her own way.

Taking change to the next level

The form eventually found its way to the T1D Exchange Quality Improvement Collaborative, a learning collaborative with a data platform to redefine best practices, enhance the quality of care, and generate better outcomes. The Collaborative brings together providers at 10 clinics, treating 24,000 individuals with type 1 diabetes. Members make small changes in care that scale up to all clinics.

“So often with diabetes, we’re unable to feel like we can make changes,” says Amy. “T1D Exchange offers a tangible way of taking an idea and creating a movement.”

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Today, Amy serves as co-chair of the Collaborative’s Patient/Parent Advisory Board, and input from her daughters helps to inform some of the Collaborative’s projects. For the Ohmers, joining this group was the perfect opportunity to have an impact on changes made in the clinic, and a way to empower other families, just as Reece and Olivia empowered themselves to improve their own clinic experiences.

“When people come together and work as a group, so much more can be accomplished,” says Reece.

For Olivia, the Collaborative was everything she yearned for from an early age. “With T1D Exchange, I’m no longer just a patient – I’m the expert,” she says.

Looking forward to the future

These days, Reece is preparing for her first year of college, where she hopes to major in psychology and eventually become a pediatrician. Olivia continues to exceed in high school. Both girls plan to stay active in type 1 diabetes advocacy efforts and recently spoke at the American Diabetes Association’s Call to Congress.

As for Amy, she says that her family will continue to work with the Collaborative to improve care for individuals with type 1 diabetes because, ultimately, everyone needs support.

“I have no doubt that they will be successful,” says Amy pridefully. “Together, we can help not only Reece and Olivia, but all kids, as they strive to reach their dreams.”

To read more from the Ohmer family, click here.

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