By Hope Warshaw, MMSc, RD, CDCES
T1D Exchange. Ring a bell? Bet you’ve watched a presentation or two or three about type 1 diabetes (T1D) and seen data presented that cites findings from studies conducted by T1D Exchange. Have you wondered: who is T1D Exchange? Read on to learn how their work has evolved and how the organization is working to advance quality and equitable care for people with T1D. Plus, get first-hand accounts of the roles of two diabetes care and education specialists (DCESs) employed at T1D Exchange Quality Improvement (T1DX-QI) participating centers.
T1D Exchange: From Birth through Decade One
T1D Exchange was established in 2009 as a non-profit organization. The entity's focus was and continues to be to improve care and outcomes for people with type 1 diabetes (T1D) in part by accelerating T1D research and cross-clinical collaboration. Core to T1D Exchange’s mission was to gather input and fresh ideas from people with T1D and their loved ones. T1D Exchange has received support from The Leona M. and Harry B. Helmsley Charitable Trust, an entity that has given generously to diabetes initiatives, including the Association of Diabetes Care and Education Specialists (ADCES) to support the association’s technology website, danatech.org.
Over the first decade, two core programs at T1D Exchange focused on:
- Developing a patient registry: In partnership with the Jaeb Center for Health Research in Tampa, Florida, led by Dr. Roy Beck, MD, Ph.D., Executive Director, T1D Exchange initiated a registry with the goal to improve care and outcomes of the T1D population by sharing best practices. This registry grew to over 80 sites, many were leading academic institutions and clinics caring for people with T1D. Enrollees participated in sharing extensive data ranging from basic demographics to lifestyle and diabetes management. This registry enabled observation and analysis over the continuum of years and allowed researchers to study and address the clinical issues of managing T1D. This partnership no longer exists as the original aims were achieved.
- Initiating a T1D social network named Glu: To help people with T1D connect with others and their loved ones, T1D Exchange began an online community named Glu. This safe and secure social network encouraged engagement and offered support along with sharing and learning. Glu used various vehicles to interest members, from real-time research to quick-to-answer questions of the day ranging from the quirky to serious; and, of course, dialogue between members.
T1D Exchange: Evolving Initiatives in Decade Two
As T1D Exchange has evolved and enters its second decade, programs have evolved to meet the needs of the T1D community. Three current initiatives seek to meet these needs by:
- Implementing and operating the T1D Exchange Quality Improvement Collaborative (T1DX-QI): The T1DX-QI, for which the formative groundwork was laid between 2014 and 2016, brings together staff from over 43 U.S.-based diabetes clinics, including adult and pediatric settings. Participating clinics contribute anonymized patient data and research. This expands the collective knowledge base and creates a unified data asset that expedites improvements and equity in care for all people with T1D. Collectively these centers deliver diabetes care and support to more than 55,000 people. T1DX-QI identifies and addresses gaps in care and accelerates evidence-based, real-world solutions. T1DX-QI is comprised of clinicians, including diabetes care and education specialists (DCES) (see interviews below), people with T1D, key stakeholders, and diabetes care thought leaders. To date, growth of the T1DX-QI has been significant, as demonstrated in their vast collection of publications. Semi-annually, T1DX-QI holds Learning Sessions. An area of focus for the T1DX-QI is health equity in diabetes treatments, and technologies among children and adults with T1D.1,2 Read about how health equity was promoted at the 2021 Learning Sessions.
- Evolving and utilizing the T1D Exchange Patient Registry: In 2019, T1D Exchange launched an online patient registry. The only criterion for the registry is that the person has T1D and lives in the U.S. The registry, which gathers information directly through participants, tracks demographics and diabetes management details, including the use of treatments and technologies. It also tracks self-reported outcomes and disease progression over time. To date, the registry includes over 12,000 people with T1D. The registry also connects participants with T1D research opportunities and connects academic and industry researchers to registry participants. Learn more about the registry and encourage clients you work with to join.
- Connecting the T1D Exchange Online Community: The Online Community, which has evolved from the original Glu network (see above), brings relevant content and resources to people with T1D and their loved ones. Community members, which today totals 30,000+, have access to a personalized dashboard. Here they can answer the question of the day, view articles authored by diabetes experts, learn about T1D research opportunities, and interact with members of this vast community. Encourage clients you work with to join the T1D Exchange Online Community.
T1D Exchange Collaborates with ADCES and DCESs
At a national and organizational level, ADCES and T1D Exchange have collaborated to share information and promote education to help improve access to quality care for people with diabetes. “ADCES and T1D Exchange, along with other diabetes organizations, are working together to advance policy and coverage changes that increase access to diabetes technologies,” said ADCES’ CEO Matthew Hornberger, MBA, CAE. “This collaboration has benefits for DCESs as healthcare providers as well as for the people with diabetes they counsel and care for,” adds Hornberger. CEO of T1D Exchange, David Walton, MBA, concurs, “T1D Exchange is pleased to collaborate with ADCES and its members to make strides on our aligned organizational goals.”
DCESs are employed at some of the 43 diabetes clinics within the T1DX-QI. To gain insight into their roles, read interviews below with Alisha Virani, MS, RD, CDCES, LD, at Grady Health System Diabetes Center, Atlanta GA and Owner, Wholesome Fuel, LLC, Consultant, and Emily Coppedge, CPNP CDCES at Cornell Pediatric Endocrinology, Weill Cornell Medicine, New York City.
In her role, Alisha facilitates individualized diabetes self-management education. She is the coordinator for the T1DX-QI at her institution. “I work directly with the physician leader to identify areas for improvement regarding clinic flow, patient/provider interactions, and our overall approach to managing T1D. We have a particularly unique uninsured population with T1D. This requires close work with clinicians, researchers, and staff to fill gaps in medication and healthcare access in consideration of these individual’s social determinants of health,” said Alisha. In addition, Alisha notes she designs and monitors QI programs and services for people with diabetes and staff to drive improvement in holistic care. “Using my expertise as a DCES, I help drive population health care delivery by taking on the site coordinator role, participating in system-based committees, and coordinating integration of population health initiatives,” says Alisha. About her work as part of T1DX-QI, Alisha said, “It spotlights the work DCESs have the capacity to do. T1DX-QI provides strategic planning resources to develop long-term QI projects and offers a platform for collaboration nationwide with other institutions, healthcare providers, and fellow DCESs.”
As a pediatric nurse practitioner and CDCES, Emily provides medical care and education, both inpatient and outpatient. She is also co-director of Cornell’s Diabetes Transition Program and the Director of Camp Freedom, their pediatric diabetes camp. “I work closely with other clinicians to implement QI projects,” said Emily. “First and foremost was implementing mental health screening tools and obtaining clinician training to further assess suicide risk of our patients. Data from this project has been shared throughout our institution bringing attention to mental health and addressing the need for further care. Through this project, I have begun to collaborate with new colleagues and demonstrated the importance of the role and skills of DCES, especially as a patient advocate,” adds Emily. She is advancing the role of DCES at her institution by serving as a department lead, taking on responsibilities for system-wide committees, and directing multiple programs within her diabetes center. “This has allowed me to work with and establish excellent relationships with our adult endocrine group and highlight the benefits and skills of DCES,” added Emily. Emily notes, “I have worked in diabetes for many years and am a person with diabetes. Being a part of T1DX-QI is so motivating. It has assisted our team in implementing projects (and keeping us focused!) and given us the opportunity to share best practices nationally. Lastly, participating in the semi-annual learning opportunities gives me a front-row seat to the care and dedication of T1DX-QI clinicians across the U.S.”
To keep up to date with how T1D Exchange continues to evolve, along with their research findings, follow the organization on LinkedIn and Twitter.
Ebekozien O, Mungmode A, Odugbesan O, et al. Addressing type 1 diabetes health inequities in the United States: Approaches from the T1D Exchange QI Collaborative. J of Diabetes. 2022;14:79-82
T1D Exchange. Abstracts for the T1D Exchange QI Collaborative (T1Dx-QI) Learning Sessions 2021. November 8-9, 2021. J of Diabetes. 2022; 14:3017
About the Author
Hope Warshaw, MMSc, RD, BC-ADM, CDCES, is a nationally recognized Registered Dietitian and Certified Diabetes Care and Education Specialist. She has spent her career, which has spanned 40 plus years, involved in diabetes care and education and has authored numerous articles, books, and journal publications. She served as the 2016 president of the ADCES.
ADCES Perspectives on Diabetes Care
The Association of Diabetes Care & Education Specialists Perspectives on Diabetes Care covers diabetes, prediabetes and other cardiometabolic conditions. Not all views expressed reflect the official position of the Association of Diabetes Care & Education Specialists.
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