T1D Exchange brings together clinics, data to improve outcomes in type 1 diabetes
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Osagie Ebekozien, MD, MPH, CPHQ, was working in Boston’s public health department in 2015 when his wife was diagnosed with type 1 diabetes.
Determined to learn everything he could about the disease, Ebekozien started doing some research and learned about the T1D Exchange, a nonprofit organization founded in 2009 with a focus on improving outcomes for people with type 1 diabetes through real-world evidence and collaboration among clinics in the U.S.
In 2017, Ebekozien joined T1D Exchange as a consultant and later became the organization’s vice president of quality improvement and population health, overseeing the Quality Improvement Collaborative program. The program includes 41 diabetes clinics that pool data to create a large, real-world database on people with type 1 diabetes. Results of studies using these data to increase use of continuous glucose monitors and insulin pumps were recently published in Clinical Diabetes.
“The mission is to use quality improvement and implementation science to improve the standard of care and clinical care outcomes for patients with type 1 diabetes,” Ebekozien told Healio.
Last week, Ebekozien’s efforts were recognized when he received The International Society for Pediatric and Adolescent Prize for Innovation in Pediatric Diabetes Care. The award was given to Ebekozien and the T1D Exchange for using quality improvement, health equity and population health methods to improve diabetes care.
Ebekozien spoke with Healio about his role with the T1D Exchange Quality Improvement Collaborative, how the group determines what it will study, and the organization’s efforts to reduce disparities.
Healio: What are the advantages of having 41 clinics share data through the T1D Exchange Quality Improvement Collaborative?
Ebekozien: There’s a huge benefit for the clinics to be involved in this work and to the diabetes community to have this number of clinics.
One of the first things we’ve done is to specify the key elements that all clinics caring for patients with type 1 diabetes should be collecting. When clinics come to our network, we share this ambitious list of clinic variables and metrics and determine what the clinics will collect. We try to help clinics figure out the current system, because right now, it’s a pain for clinicians to truly understand their full [patient] population. Different providers care for different patients, and there’s a lot of variation in who is documenting what. All of that variation means it’s hard for the clinics themselves to truly answer key questions outside the patient space.
The second piece is all of our network clinics share the de-identified data. We protect patient confidentiality and are still able to collect de-identified patient-level data. Right now, we have over 35,000 patients’ data, and we’re on track to have 50,000 patients by next year. That’s a huge resource for the diabetes community.
Beyond the population health research, we use all of the data for a separate platform called the quality improvement portal. That is a benchmarking platform that clinicians, the group and the network have access to. Because all of your data is mapped and you have access to this secure system, you can log into the portal and answer key questions with your own data in real time on how care is going. But it even goes beyond that — you can now benchmark your own data with other clinics.
Healio: How do clinics choose to participate in your studies?
Ebekozien: We have a list of 20 different metrics. Our collaborative coaches help clinics select one to three different metrics to work on at a time.
Clinics can also choose based on their own capacity and their own initiatives. For example, if a clinic is already doing some work around trying to improve equity and we have projects focused on equity, they can do that with us. Or if a clinic is looking to improve technology access, they can choose to work on continuous glucose monitoring or insulin pumps, or if they’re working on psychosocial care, they can work on depression screening.
Healio: How does the collaborative identify topics to pursue for studies?
Ebekozien: Our clinical leadership committee every 2 years hosts a retreat and strategic meeting where we review the most recent standards of care and evaluate current gaps in clinical care. We bring together the principal investigators from our sites.
The retreat involves prior homework. As a coordinating center, we assign things to the investigators based on their expertise and their interest. They review the evidence in this space from the past 2 years. We look at the ADA Standards of Care and published literature outside of the standards of care.
We go through an exercise based on a total review of all of the evidence, a total review of the standards, and we also look at the gaps. We have all of this data, so we use that to inform our prioritization. We can tell what percentage of people are having diabetic ketoacidosis across our hospitals, or what percent are having hypoglycemia, or the mean HbA1c, or any of those variables. We look at the existing literature, we look at the gaps and we use that information to figure out what we should focus on for the next 2 years.
Healio: What kind of solutions has the collaborative explored to reduce disparities in type 1 diabetes care?
Ebekozien: We created a 10-step improvement plan to work on disparities. It highlights an approach using a quality improvement and health equity lens.
Once you identify disparities as a problem, it’s important to have a diverse and inclusive team. We’re working with sites to bring in physicians of color, Hispanic physicians, Black physicians, to be part of the improvement team and part of the network, a part of voices they’re hearing on what changes they want to make in the clinic.
We’ve done a lot of work within our data infrastructure. Quality improvement includes health equity features where, instead of just benchmarking and seeing how you’re doing, you can benchmark with a health equity lens. You can see how non-Hispanic Black patients are doing compared with non-Hispanic white patients, not just for your clinic, but for all of the clinics. This creates conversation and intentionality. We’re making that more visible.
We’re also working to measure unconscious bias. We’re drafting a summary now of some of our findings on unconscious bias in the provider space. We’re trying to measure unconscious bias by insurance and by race.
We have a team of researchers and investigators committed to this issue. We’re working collaboratively with them to address all of these. We have a Health Equity Advancement Lab network called HEAL to bring forward some ideas, hold ourselves accountable, see what’s working. There’s a ton of things we can talk about on just our health equity work alone. We’re seeing this move the needle, and we believe more of this will contribute to change over the years.
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For more information:
Osagie Ebekozien, MD, MPH, CPHQ, can be reached at oebekozien@t1dexchange.org.
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