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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 quality of care and outcomes, for individuals living with type 1 diabetes (T1D). Growth has been tremendous, with 43 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 Mark Clements, MD, PhD
Mark Clements, MD, PhD is a Professor of Pediatrics at the University of Missouri-Kansas City School of Medicine and holds the Rick and Cathy Baier Family Endowed Chair in Endocrinology and Diabetes. Dr. Clements serves as the Medical Director of the Pediatric Clinical Research Unit and the Diabetes Research Program at Children’s Mercy Kansas City. He is the Co-PI of the TrialNet Clinical Center and the Data Science Lead for the T1DX-QI. Independent of his role at Children’s Mercy, Dr. Clements is Chief Medical Officer at Glooko®, Inc.
Why pediatric endocrinology?
“Early in my career, I thought that I was going into endocrinology because I was fascinated by the zebra syndromes with interesting molecular pathways,” said Clements, who was a wet lab scientist and had initial thoughts of working in a lab. “But something got under my skin about T1D,” and it ignited a passion and an urge for action.
He went on to explain, “I developed an empathy for the families. T1D isn’t like other disease states where you take a pill every day and you’re good. This disease requires decision making almost every waking hour to stay safe and in control. The entire family dynamic changes, impacting other children in the family — and a parent’s level of stress and worry.”
What led you into an MD-PhD program?
Clements shared that while approaching medical school he held an interest in the notion of human-centered care, design, and advancing technologies. “I realized that I’d need to deliver care using the best tools available — while developing and designing the next generation of them,” said Clements, who knew from the get-go that a satisfying career in medicine would require a balance of both.
What do you enjoy the most about your work?
“I really enjoy one-on-one contact with families — hearing the stories from the young people and parents that I work with. I love to dialogue with them and see if we can break through to a new understanding.” In more recent years, Clements has been excited and inspired by the QI work that Children’s Mercy Kansas City is doing in conjunction with the T1DX-QI.
“There’s always something new on the horizon with T1D — be it technology, insulin, or other tools to help individuals in their self-care. Diabetes care has a dynamic nature; it’s always evolving and moving forward, and that means our work won’t be done until we cure this disease,” explained Clements whose impactful work with TrialNet is focused on developing ways to prevent or delay the onset of T1D. Clements describes TrialNet’s objectives as “the first steps on the pathway to a cure.”
“In 2014, I became involved with the T1DX-QI. This was before the Collaborative even existed — when individuals were thinking about what it could and should be. I was invited to participate by a few colleagues that were excited after the first design meeting, and I’ve remained involved ever since.”
“We believe wholeheartedly in our involvement with the T1DX-QI at Children’s Mercy. In the diabetes center, our experience has been inspiring and transformative. It has helped to solve so many things — not just how we deliver care at a systems level — but also the feelings of helplessness and burnout that care teams can experience when they’re not engaging in improvement work. This work is empowering, and it helps to inform one’s feelings about healthcare.”
What’s impacted your practice the most?
“I’m going to give you an off the wall response that has nothing to do with science or medicine,” prefaced Clements. “What’s impacted my delivery of care the most is the study of poetry.” He went on to explain that as a Sophomore at Butler University he took a creative writing class; it challenged just about everything he knew.
“Poetry led me to a different kind of understanding of what medical care can be. Because poetry in the more modern U.S. era, beginning with the poet William Carlos Williams and beyond, involves a deep kind of listening to the human voice, and in the listening, hearing behind the words as to what the real message is.”
“I always aspire to be a listener. This entails not just listening to the words that people use, but to their body movement, voice, and the tempo of their speaking. I get a lot from that, and it helps to inform the way that I respond to others. Poetry is about understanding the world in a different way — not an objective way, but a subjective way — that helps to identify what’s below the surface.”
In addition to his active clinical practice, Clements has over 80 publications and many more in consortia. His current research is focused on developing artificial intelligence (AI) to shape proactive diabetes care. Clements explained, “We can do amazing things with one-on-one contact, but in the spirit of thinking at a systems level, if I could be more like a weatherman and identify individuals who are at the highest risk for having a fair to partly cloudy day — or thunderstorms in the next month to 6 months — we could get in front of the problems that our families experience.”
And by working with colleagues in data science to develop predictive models, he’s doing just that. Clements explained that by providing more than the standard in-clinic care (4 visits per year), personalized care becomes possible, helping to identify and serve the right families, at the right time.
“Step one was to prove that we could develop predictive models, step two was to create a rapid learning lab in the diabetes center.” This allows interventions to be dropped in as research and QI projects — with digital or behavioral interventions layered on top of a backbone of remote patient monitoring (including video, telephone, email, or portal communications driven by sharing of glucose data). “We think of this backbone as a flexible element allowing for dynamic interactions with families. Digital and behavioral interventions can help with the pace of iterative testing and lead to solutions that really work.”
“We’ve also developed a predictive model to help identify individuals that are likely to have a hospital admission within six months; we’re very excited about that work, too,” explained Clements.
T1DX-QI focus areas
“Each center takes the T1DX-QI objectives and iterates on its own interventions or ideas for change. We implement these in-clinic and report back on outcomes to the Collaborative.”
“I’m currently working on manuscripts with several investigators in the T1DX-QI on COVID-19 and T1D, and I’m on the T1DX-QI Data Science Committee, helping to review data specifications and mapping procedures. I’m also interested in the work of colleagues who are implementing innovative interventions in their own centers, such as Joyce Lee who recently published about the six habits of diabetes self-management using EHR data.”
“I’m very interested in how we can leverage this in-clinic, again, to deliver the right type of care – to the right patient – at the right time.” Clements is certain that the future of diabetes care is in advanced technologies and the understanding of how to deliver precision care to those living with T1D.
What quality improvements have you seen in-clinic?
In terms of in-clinic quality improvements, Clements responded with: “What haven’t I seen?”
“When we started working with the T1DX-QI, we worked to improve the rate of depression screening in our adolescents. We weren’t screening for this previously, and the percent of children with T1D who express symptoms of depression and anxiety is high. Identifying who is in need of help and referring them for care is important. We’ve made a lot of progress here.”
Children’s Mercy Kansas City was also heavily involved in advocacy work for CGM access through Missouri Medicaid. “We gathered a group of pediatric endocrinologists across the state, and we were able to lobby for this coverage. We strongly believe that CGM should be the minimum standard of care, and we’ve seen our CGM rates rise because of this advocacy effort.”
“My work at Glooko, which is unrelated to my work at the hospital, harkens back to my primary goal — to make a difference in the lives of children and families living with T1D,” explained Clements. Glooko is making strides by providing a connected care tool for families to passively stream their data to their diabetes provider, functioning as a remote patient monitoring platform, and exploring machine learning models. This work will help to predict which individuals may disengage with their care or see decreases of time in range, among others.
Dr. Clements is an avid student of poetry who enjoys reading and writing poems; some of his favorite authors include: Galway Kinnell, Fran Quinn, Seamus Heaney, Robert Bly, and Rumi. Clements has volunteered for over a decade as a robotics coach for the First Lego League and has developed a newfound “pandemic passion” for gardening.
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Dr. Clements, a man after my own heart and so similar to me and the work I’ve done over the years.
I developed predictive models and built software that would build aggregate, analyze, and reprogram itself to do further analyses. The software itself learned, long before AI was much beyond its nubile stage.
I also went to Midwest universities known for their physics and engineering. But consistently, survey in and survey out, I would answer, “The most valuable course taken was poetry.”
My only slight disagreement with Dr. Clements, would be his assertion concerning William Carlos Williams. It is pretty much established that the greatest war of the 20th century was not WWI or WWII but the war between T.S. Eliot and William Carlos Williams. ┬┴┬┴┤ ͡ ͡° ͡° ʖ ͡° ͡°)