Leon Bain knows diabetes too well. He has Type 1, which means his pancreas produces little or no insulin. His brother died from the frightful complications of uncontrolled Type 1. His mother had Type 2 diabetes.
So, when Bain coaches people on managing their diabetes, his life experience creates a level of trust and camaraderie that makes his advice all the more effective.
“They know they’re getting information from someone who understands what they’re going through,” said Bain, a Miami-based diabetes care liaison for a University of Florida Diabetes Institute program that helps underserved people with Type 1 diabetes. “I’ve been there.”
Now, a program designed to improve access to care and health outcomes for children and adults with Type 1 diabetes will be expanded with a $7.6 million, three-year grant from The Leona M. & Harry B. Helmsley Charitable Trust. UF Health and collaborators at Stanford University will share the award, with the UF Diabetes Institute getting about $3.3 million.
The program, called the Extension for Community Health Care Outcomes model, also known as Project ECHO®, is led in Florida by Ashby Walker, Ph.D., the director of health equity initiatives at the UF Diabetes Institute and an assistant professor of health services research, management and policy at the UF College of Public Health and Health Professions, and Michael J. Haller, M.D., a professor and chief of pediatric endocrinology in the UF College of Medicine.
The award comes after the successful completion of an 18-month pilot program that established a project that now encompasses 10 health centers around Florida and reaches an estimated 1,000 diabetes patients. Stanford operates a similar effort in California.
Participating health care providers receive virtual training and tele-education from the diabetes “hubs” at UF and Stanford. The physicians also get real-time help with challenging medical decision-making issues from diabetes professionals at UF Health.
The new grant will allow Project ECHO Diabetes to be expanded to 20 health care centers around Florida with an accompanying increase in diabetes care liaisons. The program also is expanding to people with Type 2 diabetes if their condition requires intensive insulin therapy.
But perhaps most important, the funding will allow researchers to assess whether the program’s intervention is making participants healthier. Among the things researchers will track are hospitalizations, emergency room visits and blood-sugar levels.
“The pilot project answered the initial question: If we build it, will they come?” said Haller, noting Project ECHO Diabetes’ success recruiting health centers serving underprivileged populations. “So now the bigger question is, can it really improve patient care outcomes?”
Laurel Koester, a program officer for the Helmsley Trust’s Type 1 diabetes program, said geography should not dictate access to quality care.
“Our goal in expanding Project ECHO Diabetes is to enable more people living with diabetes to get the care they need right where they are, and to demonstrate ECHO’s value for extending the reach of care at all levels of the health care system,” Koester said.
Type 2 diabetes accounts for 95% of all diabetes cases diagnosed in the United States, so expanding to serve insulin-dependent Type 2 diabetics is critically important, said Walker. And the health centers participating in the program, called spokes, have large numbers of Type 2 patients.
“The value of Project ECHO increases exponentially as we move into Type 2,” she said.
The program aims to help primary care physicians in Florida and California attain a greater level of expertise on a complicated disease by addressing the racial, socioeconomic and geographic disparities affecting outcomes for these patients.
Researchers and diabetes professionals at UF Health work with primary care physicians and patients who aren’t using an endocrinologist to determine what they need and the health care barriers that exist. Those include pediatric endocrinologist Angelina Bernier, M.D.; Sarah Westen, Ph.D., a clinical assistant professor in the UF College of Public Health and Health Professions; and Eleni Sheehan, ARNP, who works in adult endocrinology.
Walker said liaisons such as Bain are an integral part of the program.
“We’ve specifically recruited people who have a personal connection to Type 1 diabetes and who are local to the geographic area and know the area well,” she said. “They can be a champion in a way that is really meaningful for the patients. They’re functioning as peer mentors to support the spokes.”
Bain counsels patients on strategies to lower blood sugar, often sharing his experiences with technology that can help, such as insulin pumps and continuous blood-glucose monitors. He said he serves as a role model and a friend, someone in whom patients can confide.
“We want to help people and make their life a little easier,” said Bain, 48, who has lived with diabetes for 20 years. “I tell you, I really wish there had been a program like this when I was younger.”