Coaching calls
Project ECHO Diabetes provides education and support to patients and providers across the state
Slowly and carefully, Nichole Stephens opens a box marked Freestyle Libre, removes each part contained within and studies them for a moment. Stephens, who lives in Old Town, Florida, received this continuous glucose monitor from her physician and is being advised on all it offers by Xanadu Roque during their meeting at UF Health Family Medicine – Old Town.
tephens is one of the patients Roque meets with throughout Gainesville and Old Town in her role as a diabetes support coach with Project ECHO Diabetes. Roque and her five counterparts, who serve Miami, Tampa and Naples, offer peer mentorship to those who live with diabetes and may lack access to endocrinologists and diabetes-related technology.
“Xanadu has helped me with results, like getting this glucose monitor and helping me become more aware of all the things that can happen to me because of diabetes,” Stephens says.
Peer support is integral to Project ECHO Diabetes, a program at UF and Stanford University that aims to improve access to care for children and adults with Type 1 and Type 2 diabetes. The program was launched at UF in 2017, and following a successful pilot program, it was expanded in 2019 with a $7.6 million, three-year grant from The Leona M. & Harry B. Helmsley Charitable Trust. The UF Diabetes Institute receives about $3.3 million from the grant, enabling Project ECHO Diabetes to expand its service area to 20 health care centers across Florida.
Roque shows Nichole Stephens how to track her blood glucose levels using an app during a meeting in February 2020 at UF Health Family Medicine – Old Town.
Photo by Jesse S. Jones
TRUST AND CAMARADERIE
Roque and her fellow diabetes support coaches are uniquely positioned to offer guidance to patients, as each has undergone their own journey with the disease. Roque was diagnosed with Type 1 diabetes when she was 12.
“When I was younger, I didn’t really take care of myself,” Roque says. “I went through a period of time without insurance or insulin, which led me to the hospital. I didn’t see an endocrinologist for five years. I was a patient who would have benefited from talking to someone who knew more about Type 1 diabetes, somebody I could relate to.”
Roque says each patient meeting is individualized, but most of the time, they’re simply conversations. She offers open ears and an open heart, listening to how diabetes impacts these patients’ lives. She also works with them to set realistic goals for managing their diabetes.
Roque often shares her own experiences with diabetes to build a sense of trust and camaraderie. More than anything, she wants the patients she meets with to realize they are not alone.
“When you live with diabetes, you’re essentially going through it alone,” Roque says. “Even though your family and friends can support you, having somebody who knows what you’re going through is a lot more helpful. A peer support coach tries to help you get to a better point, and for the most part, they’ve been in the same place you’re in at one time in their lives.”
OUTCOMES AND QUALITY OF LIFE
Project ECHO Diabetes employs a two-pronged approach, says co-primary investigator Ashby Walker, PhD, director of health equity initiatives at the UF Diabetes Institute. In addition to direct interventions by diabetes support coaches, the program empowers primary care providers to deliver diabetes care in the family medicine setting. For many diabetes patients, their only interaction with a health care provider may occur at a primary care clinic, so providers must build a confident knowledge base to best serve this population.
This is accomplished in part through ECHO clinics held by videoconference. Walker works with Michael Haller, MD ’00, a professor and chief of pediatric endocrinology at the UF College of Medicine, and other UF experts to host a biweekly educational session, or clinic, on diabetes-related topics and run through a patient case study to discuss best practices. Physicians from across the state call in, give input and ask questions.
Walker says these clinics educate providers on health disparities some with diabetes face, including access to technologies like continuous glucose monitors or insulin pumps, products that studies have shown to be used less by some groups based on race and socioeconomic status.
“By holding these clinics, we’ve been able to educate providers on topics they have very low confidence in, like diabetes technologies,” Walker says. “We’ve seen a clear dissemination of better information to people who can be advocates for their patients to get these technologies, providers who know how to get these devices for their patients and know what their advantages are for improving patient outcomes.”
Michael Haller, MD, far left, and Ashby Walker, PhD, fourth from the left, meet with Roque, far right, other diabetes support coaches and UF Health faculty like pediatric endocrinologist Angelina Bernier, MD ’02, second from left, during regular ECHO clinics held by videoconferencing. This photo was taken in October 2019.
Photo by Louis Brems
Haller serves as a co-primary investigator for Project ECHO Diabetes in collaboration with Walker. He says the 2019 grant they received enables them to assess if the program is making participants healthier by tracking patient hospitalizations, emergency room visits and blood-sugar levels. He hopes this research proves the effectiveness of ECHO programs for patients and providers.
“We want to see this become a public health initiative, where everybody utilizes ECHO programs to care for people with diabetes and other diseases,” says Haller, who holds the Silverstein Family Eminent Chair in pediatric endocrinology. “We want to show that not only do doctors feel better about providing diabetes care, but that we are tangibly improving the quality of life and health outcomes for people living with diabetes.”
Using her own experiences living with Type 1 diabetes, Xanadu Roque offers advice to fellow patients in her role as a diabetes support coach with Project ECHO.
Photo by Jesse S. Jones
ADAPTING TO A CRISIS
When the COVID-19 pandemic swept across the nation in spring 2020, Project ECHO Diabetes pivoted to focus on what its patients needed most: education and access to technology. Coaches began conducting sessions with patients over phone and video chat that focused on the risk of more severe COVID-19 complications for those living with diabetes. For patients without access to these technologies, Haller says, Project ECHO acted swiftly to provide this population with the tools they needed to receive medical attention via telehealth appointments.
“Many of the patients we are serving with Project ECHO don’t have consistent access to the internet or videoconferencing capabilities due to the lack of a computer or smartphone,” Haller says. “We are working to address those issues with additional funding from the Helmsley Trust.”
While Haller, Walker and fellow UF faculty focused their ECHO clinic videoconferences on educating providers about diabetes and COVID-19, coaches in Miami ramped up efforts to serve as many patients as possible by holding teleconference meetings for the local community.
“Our coaches in the Miami area are serving populations most impacted by disparate outcomes in COVID-19 — African American and Hispanic communities,” Walker says. “They are holding virtual town hall meetings in English and Spanish for people living with diabetes and reaching out by phone.”
HONESTY AND TRUTH
In Old Town, Stephens shares with Roque her experiences as a teaching assistant with little free time to monitor her glucose levels. Roque shows Stephens the phone app she uses to monitor her own levels. The two women talk in serious tones in one moment and burst out in laughter the next. Stephens says she often leaves her meetings with Roque carrying a sense of hope for the future.
“It’s so refreshing to talk to another diabetic, to be honest and truthful and have her be honest and truthful back,” Stephens says. “The fact that Xanadu leads a full life while being a diabetic helps me know I can do this. If Xanadu can’t get you what you need, she will find some way to get it. I appreciate her putting the time in to do that for me, a stranger she just met. I’m glad they’ve started this program.”
Photography and most of the interviews for this story were completed prior to national guidelines of face coverings and physical distancing.
