The COVID-19 pandemic heightened awareness of pervasive healthcare inequities in the United States. Race, education, economic status and other “social determinants of health” are recognized for the role they play in health outcomes. The impact of these factors is complex, but changeable. There is hope; a pathway does exist to achieve equity and improve care for all.
New research presented at the American Diabetes Association (ADA) 82nd Scientific Sessions suggests applying a quality improvement framework with principles of health equity can improve outcomes for patients with type 1 diabetes (T1D). This framework and equity principles could potentially be applied to other disease categories, as well.
The findings point to an ongoing disparity in T1D care. In the six-year study (2016-2021) of 36,390 children and adults with T1D, it found persisting health inequities among minority groups with T1D, despite improvements in treatments and technology, such as the uptake of continuous glucose monitoring (CGM) devices. CGMs and insulin pumps have improved diabetes management, but their use varies by population.
In addition, recent data from the Centers for Disease Control and Prevention’s 2020 National Diabetes Statistics Report found approximately 1.6 million adults in the United States have T1D and use insulin, and the incidence of T1D is increasing across all populations, most significantly among Hispanic youth. According to the Report, non-Hispanic Black, Asian American and Native American people also bear the brunt of the disease burden.
So, what can stop this upward trend? It starts with listening to patients to understand treatment gaps, including them in clinical trials, and working together, as clinicians, to answer fundamental questions that may reveal the root causes of disparities, such as:
- Who is involved in a clinical trial for a new medication or a device?
- Is the practice offering all available and appropriate therapies to every patient?
- Are patient voices being included in the treatment decision-making process?
Implementation of a quality improvement framework may also be a helpful tool to reduce inequities and improve outcomes. The T1D Exchange created a learning health network in 2016, the T1D Quality Improvement Collaborative (T1DX-QI), to test this theory. Through the initiative, T1DX-QI members can identify and address gaps in care to deliver value-based care and drive positive change for people living with T1D.
One of the ways the Collaborative achieves this is by aggregating and sharing de-identified patient data directly from member endocrinology clinics through a business intelligence portal. The portal provides consistent, real-time exchange and peer-to-peer resource and knowledge sharing for member clinics. This allows the collaborative to generate reliable, validated and actionable data and deeper insights to measure healthcare utilization, quality and data benchmarking goals. Members can utilize the data to test and implement real-world solutions, create best practices and scale them to the T1D community.
The T1DX-QI addresses health inequities through six key interventions. While they are applied specifically for the T1D population, the interventions can be used for other practice areas.
- Gain Real World Data Insights
Participating clinics contribute anonymized patient data and research from their respective clinics, expanding the collective knowledge base and creating a unified data asset to expedite improvements in care for all people living with T1D.
- Address Provider Bias
All of the data shared through the collaborative is de-identified to remove any potential provider bias and ensure representation across the diverse population of patients with T1D.
- Embed Quality Improvement Science
T1DX-QI relies on an embedded and systemic approach: individual providers are empowered to identify areas of unmet need in their clinic. They make small changes in care that scale up through the T1DX-QI to create best practices, which are then shared with other clinics.
The framework it uses for Quality Improvement starts with assessing data and includes patient and caregiver perspectives in the data as it aims to increase diverse research participation, better represent patient stakeholder voices, and guide research and clinical trial equity initiatives. It is broken down into 10 main steps:
- Review of program for disparities
- Build an equitable team, including patients in the mix
- Develop equity-focused goals for improvement
- Identify inequitable approaches currently in use
- Recognize socioeconomic factors impacting outcomes
- Develop improvement strategies
- Prioritize strategies
- Execute strategy, one change at a time
- Compare results against strategy to identify what works, what doesn’t
- Repeat steps to roll-out additional equity improvement
4. Benchmark Performance with the QI Portal
The use of data benchmarking helps set goals for improving T1D treatment and care at T1DX-QI member clinics, and for measuring if those goals are met at individual clinics and across the entire collaborative. This data benchmarking gives clinics hard evidence to determine which interventions have been most effective, assisting clinics to implement and improve practices.
5. Engage Stakeholders with the Health Equity Advancement Lab Advisors (HEAL)
In addition to inviting patients and caregivers to participate in the design of quality improvement projects, the T1DX-QI convenes a network of health equity clinical and research leaders (HEAL advisors) to provide thought leadership around equity initiatives. The HEAL program meets quarterly and contributes to best practices regarding equitable T1D care by:
- Revising or developing new measures for health equity
- Providing advice and feedback on grants
- Piloting new health equity initiatives
- Applying evaluation rigors to make recommendations on equitable policies
- Sharing learning and best practices nationally
- Partner with Patients and Centers Serving Diverse Patients
Understanding inequities involves listening to the needs of diverse patients. The T1D Exchange Registry is an online research study that includes more than 17,000 people living with T1D in the U.S. The focus is to ensure representation across the T1D community, including patient populations often underrepresented in clinical studies.
It takes a multi-pronged approach to target and assess interventions to close the health equity gap. It is important that providers, medical centers, health systems, industry partners, patients and all stakeholders work together to address inequities. The goal is a future where T1D outcomes are the same for all.
Osagie Ebekozien, MD, MPH, CPHQ
Dr. Ebekozien is the Chief Medical Director of T1D Exchange. He directs the T1D Exchange Quality Improvement (T1DX-QI) learning health network of 50 endocrinology centers. He also serves as an Adjunct Professor of Population Health at the University of Mississippi Medical Center, where he teaches graduate-level population health and quality improvement courses. Dr. Ebekozien uses health equity research, quality improvement, and implementation science to improve health of patients with diabetes. He has received numerous awards for his work, including the 2021 ISPAD International Innovation Award for pediatric diabetes care. He is a frequent speaker at conferences, his work has been featured by multiple media networks, and he has authored several peer-review publications.