On the morning after their daughter’s fifth birthday, Justin Masterson and his family sat stunned in the emergency room.
As endocrinologists and nurses flurried in and out, Masterson was simply trying to wrap his brain around the fact that his daughter had type 1 diabetes and would have to inject herself with insulin every few hours. The confusion turned to frustration as someone handed him a thick paper log to calculate and record by hand every carbohydrate and dose at every meal.
“This seemed archaic and inconceivable,” he says. How could his family manage all of this–and for his daughter’s lifetime?
And then someone handed him a box containing an insulin pen. On the back was a message:
Pause. Take a deep breath. And remember:
- You couldn’t have prevented what’s happening with your child, so try not to beat yourself up.
- Although you may feel overwhelmed, other people have done this, and you can too.
- Your kid can still be a kid. Your family can still be a family.
Masterson took that breath and decided the first step to take: he would improve the clunkiness of the clinic experience.
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From the ER, he called his brother, a physician, who gave him a name of someone to help him change the system. Sarah Corathers, MD, an endocrinologist at Cincinnati Children’s Hospital–just down the street–had gone to school with Masterson’s brother. Masterson called her immediately. By sheer coincidence, she was leading an effort at Children’s launched by T1D Exchange.
Called the T1D Exchange Quality Improvement Collaborative, the initiative brings together a network of physicians and educators from 10 diabetes centers, all trying to improve care using quality improvement methods developed by the automotive industry and deployed for type 1 diabetes by T1D Exchange. Clinic members brainstorm and make small changes in their practice in short cycles of duration. Successes are then shared and implemented throughout the network.
It turned out that at that moment, Dr. Corathers was seeking a design facilitator to help bring Collaborative ideas to life.
It was serendipity at its best.
Masterson joined the Patient/Parent Advisory Board and began to deploy human-centric design concepts to help shape the ideas of providers, educators, and patients and families in the Collaborative.
Ideally, Masterson says, quarterly clinic visits with providers and diabetes educators can be used to train and empower patients and caregivers frustrated with the daily burdens of diabetes management. Unfortunately, he says, the current healthcare system cannot always accommodate that. Poor reimbursement for physicians and high out-of-pocket costs for patients make it challenging to have education and empowerment the focus of clinic visits.
The QI Collaborative is tackling that by conceiving and testing small changes that might make the system more effective and efficient. One of the first initiatives, the depression screening initiative, was a success.
To keep the momentum, Masterson is focused on “creating and testing ideas” and providing the crucial perspective of the caregiver. He knows firsthand that when individuals with type 1 diabetes leave the clinic, providers are no longer the primary caretakers.
“Parents and families can make a big impact by working with [endocrinologists] collaboratively,” he says.
Masterson points to a time when his daughter started showing signs of distress due to burnout from diabetes management. He brought this to her care team’s attention. They immediately designed a more compassionate treatment plan that extended beyond managing HbA1c levels, and focused on connecting the family to a psychologist trained in diabetes psychology. That therapist gave the family a series of cognitive-behavioral tools that not only relieved burnout, but also helped the whole family try to think with the perspective of a child living with diabetes. It was invaluable, he said.
It is these seemingly obvious steps that are often overlooked by busy clinicians with limited amounts of time with patients, but that the QI Collaborative is helping to make standards of practice.
“That to me feels like type 1 diabetes care,” says Masterson.