New NIH Study at UH Rainbow Babies & Children's Hospital Pioneers New Approach to Lessening Disparities in Type 1 Diabetes

First-of-its-kind intervention combines remotely monitored diabetes dashboard with community health workers as technology coaches for Black patients and families

Innovations in Pediatrics| Winter 2023

A research team from University Hospitals Rainbow Babies & Children’s Hospital has secured funding from the National Institutes of Health to develop and test a novel method of addressing persistent racial disparities among Black children and teens with type 1 diabetes.

Sarah MacLeish, DO

Why it matters: Studies show that Black pediatric patients have higher HbA1c values than other groups and are significantly less likely to use emerging diabetes technologies, such as continuous glucose monitoring (CGM). In fact, data reveal that Black children are 2.7 times less likely to start CGM within the first year of diagnosis, and 4.1 times less likely to continue use of CGM. The disparities are similar with insulin pumps.

The new grant at UH Rainbow will support development of a diabetes triage dashboard, fed by data from patients’ CGMs, insulin pumps and automated insulin delivery (AID) systems and linked to the patient with a smartphone app. This app will send messages that patients can respond to and then receive an automated response, including a direct email and phone number to the diabetes care team. Helping patients navigate all this technology will be community health workers serving as technology coaches.

The goal is to see whether this multifaceted approach can help improve outcomes among Black children and teens with type 1 diabetes, says Sarah MacLeish, DO, principal investigator on the new NIH grant and a pediatric endocrinologist at UH Rainbow.

A First in the Field

“This project will be the first randomized study to test this bundled approach of the diabetes triage dashboard with smartphone application and community health workers,” she says. “Our project will address barriers specific to the Black population, from the patient side as well as the provider side. Although either the triage dashboard intervention or community health worker may be effective alone, we hypothesize that the combination of the two is critical in reducing barriers to successful diabetes technology initiation and continuation by identifying which participants are struggling with wearing the devices or meeting glycemic targets and providing in-home, hands on, practical support and building trust with their healthcare team.”

Soliciting Stakeholder Input

Dr. MacLeish and the study team are currently conducting interviews and focus groups with stakeholders who can guide the creation of the new diabetes dashboard -- Black parents, parents of Black children, young adults who grew up with type 1 diabetes who are Black and healthcare workers taking care of Black children.

“Our project will reflect the thoughtful feedback from racial/ethnic minority young adults who grew up with type 1 diabetes and parents or guardians of children living with type 1, as well as diabetes nurses, social workers and pediatric endocrinologists who care for a large population of Black children with the condition,” she says. “They will help us define specific triage metrics, ascertain how frequently the dashboard will be monitored, refine messages from the smartphone app, determine how to best approach participants who are identified as high risk, and how to best utilize the community health workers while also building trust.”

Head-to-head Study

Once the dashboard is built, Dr. MacLeish and the study team will conduct a 1:1 randomized controlled trial of the dashboard-community health worker intervention, comparing it to the standard of care. All participants in both groups will receive standard technology education and will be recommended to start CGM and AID. The research team will also delve deeply into the different issues faced by Black children and teens with type 1 diabetes, assessing problem areas in diabetes management, barriers to diabetes technology and the perceived benefits and burdens of CGM, among other issues. At the end of the four-year study, the team will conduct one-on-one interviews with all 60 study participants regarding their experience with the smartphone application-community health worker approach.

Potential Impact

Dr. MacLeish says she’s cautiously optimistic that the dashboard the team will build will make a difference for her patients.

“A diabetes triage dashboard has the potential to target many of the barriers to technology use cited by Black families,” she says. “The dashboard will enable the care team to quickly identify barriers to device use and provide relevant feedback to patients. On the provider side, the dashboard will triage patients into risk zones, allowing for closer follow-up and better allocation of resources to the highest-risk patients.”

It’s clear, she says, that the diabetes devices alone are not enough for many patients.

“We prescribe devices, and then all sorts of problems that can happen, and sometimes it's hard to troubleshoot for patients and their families,” she says. “They might not reach out to us, because they're very busy dealing with everything else in life, and then we don't know about the problem until their next visit three months later. So we're just hoping that the dashboard will allow us to intervene and help them stay on the device in something close to real time.”

Plus, she says she’s hopeful that attacking racial disparities from multiple angles will provide new solutions to a persistent problem.

“This is the first randomized study of a community health worker in the role of diabetes technology coach, with added intervention of diabetes triage dashboard and an interactive app,” she says. “I hope we find that our community health worker-dashboard combination helps us to increase technology use. We want our Black patients to use the same amount of technology as all other racial groups. That's the benchmark we're looking at. We're hoping to see at least a 50 percent improvement in this study. But the ultimate goal would be to make it equal.”

Contributing Expert:
Sarah MacLeish, DO
Pediatric Endocrinologist
UH Rainbow Babies & Children’s Hospital
Associate Professor of Pediatrics
Case Western Reserve University School of Medicine