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T1D Reform Needs Patient Voices to Succeed

By Shahd Husein/GluShahd

Diagnosed with type 1 diabetes on his 10th birthday, Craig Bobik had one burning question: Why me? Why the week-long stay at the hospital to learn the ins and outs of living with type 1 diabetes? And why would his life be filled with a careful regimen of balancing food intake, insulin, and exercise? Those questions receded to the background as Bobik grew accustomed to life with type 1 diabetes, but other questions have remained unsettled. For example, he wonders why, after 36 years, does blood sugar management at times still feel anything but routine?

“As you age, making adjustments to your diabetes management can feel like you’re being diagnosed all over again,” he says.

He points to a recent change in insurance coverage that forced him to switch test strips and glucose meters after 25 years. This left him with only one glucose meter for which he could be reimbursed, and the need to calibrate an unfamiliar device. Thirty years of success managing type 1 diabetes does not ease the anxiety that comes with such a change, he says.

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Experiences like this are why Bobik lent his voice to the T1D Exchange Quality Improvement Collaborative. The Collaborative is a network of physicians and educators from 10 diabetes centers, all trying to improve care by using the quality improvement method pioneered by the auto industry. Participants measure their current care practices and patient outcomes, and then make small changes to see if they might improve care. Successes are then shared and implemented throughout the network.

“I’ve pushed the QI Collaborative to understand the burden of living with diabetes,” says Bobik, who is now a member of the Collaborative’s Patient/Parent Advisory Board.

That burden takes so many forms. Sometimes it can just be hard to keep measuring blood sugar when one should, he notes. And then there are the external changes, like changes in insurance formularies, which can strike fear in people with type 1 diabetes. It’s not just about feelings – high deductibles have forced individuals to skip insulin or opt out of buying supplies due to cost. Even Bobik, who is insured, admits to feeling “very concerned” about the cost and accessibility of medication as he grows older.

This is but one of the many issues that matter to patients. Such concerns may be overlooked by even the most well-meaning and reform-minded clinicians who might be more focused on what they see with their own eyes in clinics, he says.

“Mixed in the middle of these priorities is a patient living with a chronic disease,” Bobik says.

With the help of input from patients like Bobik, the QI Collaborative is making strides to address patient burdens in the context of the clinic. The network is now beginning to download data from electronic medical records and devices to reveal gaps in the quality of care. This data can promote system-wide changes and inform larger clinical research studies. And the data, analyzed and used by the Collaborative, can drive research and quality improvement efforts toward areas that patients care most about, Bobik says.

“We need to shift the conversation so that it’s not just about numbers and data, but how that data interacts with someone’s daily life,” he says.

Craig Bobik. Photo by Ezra Ekman / ShotInTheAct.com.

Glu is published by T1D Exchange, a non-profit dedicated to improving care and accelerating therapies for people affected by type 1 diabetes. If you would like to donate to our mission, please click here.

 

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