New Grant Supports Creation of the Rising T1DE Alliance
Using “Big” Data to Personalize and Improve Type 1 Diabetes Care in Rapid, Proactive Manner
Prevalence and Complications of Pediatric Diabetes
According to the Centers for Disease Control, new diabetes cases have decreased over the last decade, except in people under 20. In fact, in 2018, approximately 210,000 children and adolescents younger than age 20—or 25 per 10,000 U.S. youths—had been diagnosed with diabetes. This included 187,000 with type 1 diabetes.1
The increasing frequency of both type 1 and type 2 diabetes in children and adolescents is a growing clinical and public health concern. Studies show long term that poor disease control at any age significantly raises the lifetime risk of serious complications, including heart and kidney disease, blindness and death.
Partners in Improving Pediatric Diabetes Care
In 2017, The Leona M. and Harry B. Helmsley Charitable Trust awarded funding to Children’s Mercy Kansas City to address these growing concerns by embarking on a grant project to achieve performance improvement in health care systems, leveraging predictive analytics technology developed by Cyft, Inc. The project’s goal was to use big data to identify high-risk youth with type 1 diabetes for more intensive intervention. The current grant extends the implementation of that work.
Mark Clements, MD, PhD, pediatric endocrinologist, Director of Endocrine/Diabetes Research, and Medical Director of the Pediatric Clinical Research Unit at Children’s Mercy Kansas City; and Leonard D’Avolio, Assistant Professor, Harvard University and Brigham and Women’s Hospital, and CEO, Cyft, Inc., are leading this project.
Also providing leadership to the current project are Sanjeev Mehta, MD, MPH, advisory committee chair, Joslin Diabetes Center; Susana Patton, PhD, CDE, director of intervention development, Nemours Children’s Health System; Ryan McDonough, DO, champion for clinical quality improvement; and several staff and faculty from the Children’s Mercy Diabetes Center and other departments across the hospital. Laurel Koester and Ben Stang from the Helmsley Charitable Trust serve as program officers who engage in ongoing conversations with the team on all aspects of the project.
Leveraging Technology to Rapidly Learn
Initially, the project used the large volume of data captured from routine care of youth with type 1 diabetes, such as the free text notes found throughout electronic health records (EHRs). By combining EHR data with multiple other data sources — such as diabetes self-management device data and patient-reported outcomes data — the researchers were able to develop robust predictive models for clinically important outcomes. They focused on two preventable outcomes: deteriorating blood glucose (A1c) control, and hospitalization for diabetic ketoacidosis. Having robust models to predict these two outcomes gave the researchers important targets for improvement.
From this foundation, Dr. Clements, Dr. D’Avolio and colleagues have now developed a nascent initiative called the Rising T1DE Alliance. The idea is to bring researchers and diabetes centers with similar goals together to learn how to scale innovations based on the immense amount of data generated during routine diabetes care, and to rapidly test innovative approaches to care that hold promise for improving outcomes for these youth.
Grant Supports Creation of the Rising T1DE Alliance and its Rapid Learning Approach
Based on the success of the initial project, Children’s Mercy recently received $9.75 million in funding from the Helmsley Charitable Trust to support the launch and scaling up of the Rising T1DE Alliance and its proactive, rapid approach over the next three years. The goals of this funding cycle — which will continue leveraging the predictive analytics technology developed by Cyft — are to 1) apply patient- and family-centered design to the development and implementation of novel behavioral, mHealth and care delivery interventions, 2) test multiple interventions for effectiveness in improving each predicted outcome, 3) predict new clinically relevant outcomes, 4) test new data types and sources for their ability to improve outcome predictions, 5) evaluate the cost-effectiveness of various approaches, and 6) disseminate findings.
Once novel interventions have been tested and validated, the team’s learnings can be shared via playbooks with other clinics. With this approach, other clinics will have access to the details necessary to implement an intervention and/or predict an outcome, thereby saving time and resources and leading to better decision-making.
Current interventions being tested include:
- Remote patient monitoring, which involves frequent sharing of diabetes data and frequent video or audio micro-visits via telehealth. The goal is to deliver timely and personalized interactions, facilitating just-in-time discussions regarding current disease control and self-management.
- Text messaging interventions to nudge behaviors and support communication between families and the health care team.
- Behavioral economic interventions that incentivize youth for positive behaviors that promote health. The researchers think this may be of interest for youth with diabetes who are predicted to have a rise in their A1c because it may help them better manage insulin at meals. This is a first-of-its-kind intervention.
- Just-in-time diabetes education based on the real-time changes in a young person’s glucose levels.
- A screening and referral program for social determinants of health.
Early Results Show Improved Outcomes
Children’s Mercy is already leveraging data science to predict outcomes and to apply quality improvement methods and implementation science to improve diabetes outcomes.
Dr. Clements has presented early results from this research at high-impact meetings, including the International Society for Pediatric and Adolescent Diabetes, and team member Emily DeWit has presented findings at the Advanced Technologies & Treatments for Diabetes conference. Upcoming data publications are also anticipated.
- A validated model to predict 90-day rise in Hemoglobin A1c.
- A validated model to predict 180-day risk for hospitalization due to diabetic ketoacidosis.
- Early evidence of clinically significant risk reduction for rising HbA1c with remote patient monitoring.
Moving forward, the Rising T1DE Alliance will bring academic- and industry-based innovators together with other interested diabetes centers, benefiting patients and their families. The initiative will help researchers to better understand patient behaviors, to implement timely and appropriate interventions, to continuously monitor outcomes across large clinic populations, and to share successes that other health care professionals can implement with confidence. This, in turn, will drive better care for children and adolescents with type 1 diabetes, reducing the lifetime risk of serious complications and improving satisfaction with the overall model of diabetes care.
Learn more about Pediatric Endocrinology and Diabetes at Children’s Mercy
Mark A. Clements, MD, PhD, Rick and Cathy Baier Family Endowed Chair in Endocrinology; Director, Endocrine/Diabetes Clinical Research; Medical Director, Pediatric Clinical Research Unit
For consults, admissions or transport call: 1 (800) GO MERCY / 1 (800) 466-3729.
National Diabetes Statistics Report 2020: https://www.cdc.gov/diabetes/pdfs/data/statistics/national-diabetes-statistics-report.pdf. Accessed 7/14/2020.
Children’s Mercy Kansas City is an independent, non-profit, 390-bed pediatric health system, providing over half a million patient encounters each year for children from across the country. Children’s Mercy is ranked by U.S. News & World Report in all ten specialties. We have received Magnet® recognition five times for excellence in nursing services. In affiliation with the University of Missouri-Kansas City, our faculty of nearly 800 pediatric specialists and researchers is actively involved in clinical care, pediatric research and educating the next generation of pediatricians and pediatric subspecialists. The Children’s Mercy Research Institute (CMRI) integrates research and clinical care with nationally recognized expertise in genomic medicine, precision therapeutics, population health, health care innovation and emerging infections. In 2021 the CMRI moved into a nine-story, 375,000-square-foot space emphasizing a translational approach to research in which clinicians and researchers work together to accelerate the pace of discovery that enhances care.