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The T1D Exchange Quality Improvement Collaborative (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.
Interview with Jeff Hitchcock
Jeff Hitchcock is the Founder and President of Children with Diabetes (CWD), an Honorary Member of the International Society for Pediatric and Adolescent Diabetes (ISPAD), and a recipient of the T1D Exchange 2021 Outstanding Parent Advisor Award for his advocacy efforts in driving health outcomes and supporting individuals with T1D.
Hitchcock, who has a BS in computational mathematics, self-describes his degree as “computer science before there was such a thing.” His storied history includes working in the U.S. intelligence community, as a defense contractor, and in software engineering. After the T1D diagnosis of his then 2-year-old daughter, Marisa Hitchcock, he employed his knowledge and experience to lay the foundation for CWD.
Let’s talk about CWD
“CWD began with a simple mission,” explained Hitchcock. “We wanted to share our family’s experience caring for a child with T1D, but we weren’t the kind of family that participated in hospital-based support groups. Our challenge became, ‘How do families like ours meet other families to learn about real-life T1D experiences?’”
While it wasn’t commonplace, Hitchcock thought a website would be the perfect medium to build this support structure. So when Hitchcock found himself between jobs in 1995 (a handful of years after Marisa’s diagnosis), he called his internet provider and said, “I need a full-time, 28.8 modem connection — I’m going to launch a website about caring for kids with diabetes.” And in short, the soft yet cutting-edge launch of a non-profit organization providing education and support to individuals with T1D and their families was underway. `
“I thought — you know, the internet — it’s going to be big! And it was, I was just a little early,” said Hitchcock. “Back in 1995, there weren’t hosting companies. You could only buy bandwidth from a telecom.”
So Hitchcock did what no one else was doing. He converted part of his basement into a data center including eight T1 lines running into the house and upgrading the air conditioning system to keep everything cool.
“It was not a normal house, but it was the only way to do it back then. I can tell you one thing, I never want to worry about a hard drive dying on a server inside of my house again,” chuckled Hitchcock.
The evolution of CWD is a story in itself. From 1995 to 2000, CWD existed solely online. But in late 1999, things really began to change.
“Laura Billetdeaux, the VP of Educational Programming, asked if anyone wanted to ‘share a vacation’ with her family in the coming summer.”
It ended up becoming a ‘T1D Woodstock’ of sorts, gathering 550 people (110 families) in Orlando — more than anyone had imagined. This organic, grass-roots gathering served as the basis for the yearly Friends for Life (FFL) conference with sponsors, exhibits, scientific sessions, social events, and more.
“It was born from the simple goal of trying to meet others like us in person,” explained Hitchcock who equates FFL with a feeling of coming home. “It’s the experience of the TV screen changing from black and white to color as Dorothy walks into Oz. Being where you belong; it’s a shared experience for sure.”
When did you become involved with T1DX-QI?
“I remember learning about T1D Exchange early on and the purposeful gathering of Registry data,” explained Hitchcock, who attended a meeting in Cincinnati during the formative years and was invited to participate on the patient/parent side of things, too.
“Through shared personal perspectives, we’ve helped the QI team to focus on things that really matter to people with T1D,” explained Hitchcock. And over the years, this has produced enormous amounts of value. “Asking questions about the lived experience is the only way to gather that kind of information, and I’m always eager to see learning produced in such a way.”
Hitchcock explained that T1DX-QI participates in the CWD Orlando Conference providing speakers, data presentation in poster sessions, and engaging more people through education about the Exchange — and how to sign up for the Registry.
“It’s a great way to introduce people to T1D Exchange and also for them to learn about the groundbreaking work that’s underway.”
Tech, health disparities, and outcomes
“I’ve always thought of T1D as an information management disease more than anything,” said Hitchcock, “I’ve lived long enough in the T1D space to have seen a radical change in how the tools work such as the gathering of glucose data and how insulin is given. Today’s tools, and the secondary data, are really making a difference with a continual stream of insights.”
Continuous glucose monitoring (CGM), insulin pumps, and automated insulin delivery (AID) systems are helping to make tremendous strides in dosing decisions. “We know the profound difference they can make, but it’s important not to lose sight of the fact that there’s limited access to these tools,” said Hitchcock.
“When we look at documented disparities in the U.S., there are a variety of reasons for them,” explained Hitchcock. “While some are socioeconomic, others are related to insurance, or race and ethnicity — regardless of ability to pay. There’s no reason why a child of a family of color shouldn’t be offered exactly the same tools as anyone else.”
But it’s happening, and it’s an area of considerable interest for health equity work at T1DX-QI, and for Hitchcock’s daughter Marisa, who now serves as the Clinical Director at CWD. That being said, it’s not just an access issue. There are many people in the U.S. living in “digital deserts” without affordable, high-speed internet.
“Diabetes tools require a robust and ‘always-on’ internet connection,” said Hitchcock. “Without it, it’s difficult to fully benefit from data analytics, alarming, interconnectivity, and other things that most of us take for granted.”
Regardless of tooling improvements, T1D is a challenging disease to manage and it can have particular impacts on an individual’s psychosocial health.
“We have to focus on helping individuals and families to stay involved in a game they can never quit, but they can never win,” explained Hitchcock. “I liken this to being on the football field — you’ve got to move the ball down the field and across the goal line — but you never can do it, and you can’t leave the field.”
“While there’s a greater awareness about the burdens of T1D, we now know that they can be as limiting as anything else. If we can help people by providing them with the tools, support, and increased resilience to deal with T1D every single day, good things will come,” said Hitchcock. “It’s so important to address mental health. We know many people are carrying these burdens.”
Outside of his dedication to T1D, Hitchcock enjoys photography and reading. He’s looking forward to more “unplugged” vacations as CWD is no longer a two-person operation.
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