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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 daily life for people with type 1 diabetes (T1D). Growth has been tremendous, with 54 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 Nana-Hawa Yayah Jones, MD
Nana-Hawa Yayah Jones, MD is a Pediatric Endocrinologist and Assistant Professor in the Division of Endocrinology at Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio.
Why pediatric endocrinology?
“I always knew I wanted to work with kids, so once I decided to become a doctor, I knew I’d be working in pediatrics. When I went through my pediatric residency and I got to endocrinology, it clicked — it’s as simple as that,” said Jones.
“My parents are from Ghana, West Africa, and I immigrated to the U.S. when I was 6 years old,” shared Jones. Her early work focused on reducing healthcare disparities and inequities in her first year of residency.
“I was seeing African American girl after African American girl with T1D in diabetic ketoacidosis (DKA). And I was like — what’s going on here? The pathophysiology is the same, the disease is the same, so why are my young girls in DKA so frequently? That’s where my passion for equal access to healthcare arose,” reflected Jones.
Chronic diseases with preventable complications…
Jones’ interest in helping people living with chronic illnesses that carry the potential of preventable complications spread into congenital hypothyroidism (CH), too.
“CH is a different disease than T1D, but it has the same premise, in that they’re chronic diseases with very preventable outcomes that can be easy — but also complex,” explained Jones.
Jones explained that CH is diagnosed at birth with routine newborn screening tests. But if thyroid medication isn’t given daily, kids can develop severe neurocognitive dysfunction and developmental delays, as thyroid hormones are essential for brain development.
“When I started as an Assistant Professor at Cincinnati Children’s Hospital, a family presented with their 8-year-old for a ‘new CH visit’ — which didn’t make sense,” explained Jones. “I told my nurse there was no way I could see them (they were an hour late for their appointment). But I thought, ‘Let me see what’s going on here’ and as I dug into the chart, I discovered this child had the highest labs I’d ever seen. So I ran into the hallway yelling, ‘Don’t send them away, check them in!’”
Long story short, he had been diagnosed at birth, but there were a lot of barriers to care. With improvements at 18 months of age, social support services peeled away, and they were told to follow up in six months, said Jones. “And seven years later, he’s in my clinic and completely developmentally delayed. We always say there are no sentinel events in endocrine, but this was one of them — and it should never have happened in a first-world country.”
“No one had dug deep with this high-risk family to understand what their barriers to care were, and they tried to put a Band-Aid over a hemorrhage.” This experience was a call for action and prompted Jones to start a QI initiative to reduce loss of follow-up in patients identified as having CH.
Helping people get the healthcare they need
“I always say that I’m a clinician at heart — and I don’t call myself a researcher — my lab is seeing patients in-clinic,” said Jones.
“I’m doing a lot of health disparities work right now with T1DX-QI to reduce health inequities in the delivery of diabetes technology,” said Jones, who further explained that this work stems from lower rates of CGM and pump use in Black and Hispanic patients.
“We’re working really hard on the concept of co-producing. I recently was able to identify a Hispanic T1D patient with device hesitancy. I did a focus group with her and it was amazing to hear her perspective. “As providers, we’re aware that patients may think of us as the ‘bad guys,’ but she gave me the reassurance that we’re doing the right thing. She told me, ‘You give me a good amount of nag,’” explained Jones, laughing.
“My patients are what I enjoy most about my work. They never cease to amaze me — there’s always a story or an event that happened. Even though it can be frustrating sometimes, they make me laugh. As I do more and more research I don’t want to peel away from my patients, because that is where my joy is — that is where I get my mojo,” shared Jones.
Amongst her teeming health equity work, Jones is also leading social determinants of health (SDOH) screening in the diabetes clinic at Cincinnati Children’s. “We’re trying to identify SDOH including food, shelter, transportation, finances, and housing issues in our T1D population, but I’m also working with an SDOH core task force to spread this screening hospital-wide,” explained Jones.
Additionally, Dr. Jones and Dr. Corathers have been awarded a Helmsley Charitable Trust Grant to discover where health inequities lie in their patient population, identify barriers to education, technology access and use, and loss to follow-up.
Jones is also working with the Health Equity Network, a Cincinnati Children’s learning collaborative that’s trying to reduce hospital utilization in high-risk patients.
“For T1D patients, we’re targeting Black patients with high rates of hospitalizations and ED visits, because the gap between Black and white patients with T1D is almost two-fold in terms of DKA. That gap remains for non-diabetes-related admissions, too. We’re targeting interventions to reduce that gap.”
“I’ll be continuing T1DX-QI diabetes technology work with the Medtronic Grant to improve CGM access in Black and Hispanic patients, and work associated with our Helmsley Grant. At Cincinnati Children’s, we’re adding another high-risk clinic, and a psychologist in-clinic, and we’re starting case assessments as a team. In addition, a member of our technology team is starting to meet with patients to assess barriers and document them on the EHR, so we can find better ways to introduce technology,” explained Jones.
Jones is also working with a pediatric endocrine fellow on health literacy screening using The Newest Vital Sign which will start this spring. “We’re looking to see if there are any associations with health literacy and diabetes outcomes,” said Jones.
Finally, Jones explained that her team is working on the next steps to help reduce higher rates of admissions and emergency department visits for Black patients.
“Our work here will connect diabetes educators, RN coordinators, and community health workers to these individuals, help to implement technology, and perform knowledge assessments to identify gaps in care.”
When asked what she likes to do outside of work, Jones replied, “Sleep” — followed by her contagious laughter. While she does love her sleep, she also enjoys time spent with her two children, ages 11 and 15. She is also a member of Delta Sigma Theta where she serves as a mentor and advocates for African American girls in middle school, introducing them to science, technology, engineering, and math.
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Meet the Expert: Preventing Disease Complications By Addressing Health Equity
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