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It shouldn’t be surprising at this point to hear about racial disparities and inequities across America’s healthcare system. Diabetes care is no exception.

Research has long shown evidence of racial and ethnic disparities in diabetes care, and a new book even traces how prejudice historically led researchers and clinicians to reinforce stereotypes.

People of color in the diabetes community certainly don’t need the focus of Black History Month to tell them the reality of what they’ve always experienced.

But now, a group of clinics across the country, led by the Boston-based nonprofit T1D Exchange, is exploring how these inequities play out and taking real steps to make change.

Their work is fueled in large part by what’s happening now with the pandemic causing a transition to heavy reliance on telehealth.

T1D Exchange published a first-of-its-kind study on January 7, 2021.

The study was conducted at 52 sites across the United States that are part of the T1D Exchange clinical network, looking at whether Hispanic and Black Americans with type 1 diabetes (T1D) who tested positive for COVID-19 had higher rates of diabetes ketoacidosis (DKA) compared to non-Hispanic white patients. Results showed clear evidence of racial disparities.

“This study is the first systematic examination of racial-ethnic disparities for people with T1D and COVID-19 infection, using a diverse cohort, with equal representation from both Black and Hispanic groups. Our findings demonstrate that Black patients with COVID-19 and T1D have an additional risk of DKA beyond the risk already conferred from having longstanding diabetes or being of minority status,” the authors stated.

The research included 180 patients with T1D between April and August 2020, and results showed that Black American T1D patients were 4 times more likely than white patients to get DKA and severe COVID-19, after adjusting for health insurance status and other factors. For Hispanic patients with T1D, that risk was twice as high as what’s seen in white patients.

Dr. Osagie Ebekozien, T1D Exchange

“Our findings of troubling and significant inequities call for urgent and targeted interventions,” said lead study author Dr. Osagie Ebekozien, who serves as Vice President of Quality Improvement and Population Health at T1D Exchange.

“The urgent transition to managing diabetes remotely during the COVID-19 pandemic may exacerbate long-term inequities because some vulnerable patients might not have access to technology devices necessary for effective remote management,” he said.

Ebekozien and other multiple researchers involved point out that these issues go above and beyond COVID-19.

“It’s no surprise that these differences and inequities exist, and that they are so ingrained in our healthcare system and society,” Ebekozien said. “What some people may find surprising is the magnitude and depth of the inequities, to see how shockingly different these outcomes can be. A huge part of our society is left behind, and a lot of us don’t want to see that. We need to address these inequities that exist.”

T1D Exchange is looking at practical ways these gaps can be reduced outside of hospital and healthcare settings.

Ebekozien said that aside from expanding access to continuous glucose monitoring (CGM) in marginalized communities (so they can get a better picture of what’s working or not in their diabetes management), a few main ideas stand out.

Bias training for healthcare professionals

One of those is to start requiring implicit bias training for healthcare professionals (HCPs). This became a discussed topic in 2020, and several states (Connecticut and Michigan, for example) have moved toward implementing this type of training for state workers and healthcare workers — particularly those in hospitals, where COVID-19 patients have been shown to reflect the adverse effects of bias.

“We must accept this is a broken, unequal system with different outcomes and experiences all because of a patient’s race or ethnicity,” Ebekozien said. “I don’t think providers go into a room thinking they’ll treat someone any differently, but so much of this is ingrained and happens for any number of reasons.”

A core recommendation is that clinicians should examine their own practice’s data to assess how they interact with patients, prescribing medications and recommending devices: Are white patients regularly getting more than patients of color?

“Even if they are looking at themselves as being fair, the numbers and trends in prescription data might show something different, and that can be a shock,” Ebekozien said. “We have to move away from the emotions that come up with this topic, to look at the numbers and outcomes — just like any research study.”

Tracking quality at diabetes clinics

For some time now, experts have agreed that an improvement collaborative should be developed for clinics practicing diabetes care, to help them better recognize on-site unconscious bias and more effectively serve their patients.

To meet this need, back in 2016, T1D Exchange established its T1D Exchange Quality Improvement Collaborative (QIC). It currently includes about three dozen endocrinologists in 25 clinics across the United States. They are working to scale up to broaden the impact beyond just the 45,000 PWDs currently included through participating clinics.

The QIC focuses on two things: learning conferences that teach professionals cross-clinical best practices in reducing inequities in how they treat patients, and data benchmarking to help member clinics understand where they stand, and set goals for improvement.

To enable that benchmarking, member clinics share clinical trial data on a secure server, with zip codes, outcomes, race and ethnicity data included. They submit their own data based on their patient populations, and then the QIC collectively analyzes that data to identify gaps within institutions. They then share that feedback with the group so they can work with T1D Exchange coaches and experts on improving their care delivery.

“We do a lot of practical work to help physicians have guidance on where to start on these issues,” Ebekozien said.

“We’re trying that out in some centers for different initiatives and perspectives, such as pump use and CGM access. We’re being very intentional on inequity gaps.”

It’s already helping, Ebekozien said.

For example, a study published in June 2020 shows that five participating QIC clinics established cycles to test and expand insulin pump use in patients of all backgrounds aged 12 to 26 years old. Three of the five saw substantial improvement, ranging from 6 to 17 percent and a huge 10 percent improvement across the QIC clinics over the course of 20 months in improving insulin pump use. That included more diverse and inclusive technology embracement, too.

Ten steps to improvement

In addition, T1D Exchange is spearheading a 10-step framework for clinics on addressing racial inequities. The steps are as follows:

  1. Review program/project baseline data for existing disparities. This is the benchmarking step.
  2. Build an equitable project team, including patients with lived experiences. Instead of surveys or focus groups, they propose that individuals/families who are disproportionately impacted be included as active members on QI teams.
  3. Develop equity-focused goals. For example, to increase the proportion of patients using CGM by 20 percent and reduce the disparities among public and private insurance patients by 30 percent in 6 months.
  4. Identify inequitable processes/pathways. They’re encouraging clinics to create a visual map or diagram to depict how patients move through treatment at their centers. This “can depict how there might be inequitable pathways in a system,” they noted.
  5. Identify how socioeconomic factors are contributing to the current outcome. Clinics should work to identify commonplace factors in five categories: people, process, place, product, and policies.
  6. Brainstorm possible improvements. This might include things like redesigning the existing workflow, piloting CGM educational classes, and using a CGM barrier assessment tool to identify and address barriers to adoption.
  7. Use the decision matrix with equity as a criterion to prioritize improvement ideas. They’ve created a matrix that compares trade-offs on cost, time, and resources, and also specifies “impact on equity” as one of the criteria.
  8. Test one small change at a time. Each small change should be measured for impact.
  9. Measure and compare results with predictions to identify inequitable practices or consequences. After each test of change, the team should review the results whether (and why) their predictions were correct or inaccurate and whether there were any unforeseen outcomes.
  10. Celebrate small wins and repeat the process. “Making fundamental and equitable changes takes time. This framework aimed at undoing inequities, particularly those inequities that have been amplified by the COVID-19 pandemic, is iterative and ongoing. Not every test of change will impact the outcome or reduce inequity, but over time, each change will impact the next, generating sustainable effects,” the authors wrote.

Doctors and clinics are just one piece of the puzzle. It also comes down to reaching out the PWDs who are not currently getting the diabetes care they need — particularly those in lower-income or rural communities, who may be grappling with health literacy or socioeconomic challenges.

Those people need to hear about channels to get help. This is where targeted awareness and educational initiatives can help, Ebekozien said.

There are already multiple broad initiatives focused on DKA awareness, led by big organizations like JDRF and Beyond Type 1. But tracking data shows that those mainstream efforts aren’t reaching the people who need that information the most.

T1D Exchange suggests that new targeted efforts might include:

  • having HCPs develop brochures to hand out in community centers, churches, and grocery stores highlighting the dangers of high blood sugars
  • providing information about accessibility of ketone strips (to detect DKA) in local communities
  • providing guidance on what happens if someone skips an insulin dose, which comes up for newly diagnosed PWDs as well as those who have trouble affording insulin or other diabetes meds and must ration
  • broadening local access to healthcare, such as ways to schedule appointments outside of normal business hours in case someone can’t leave work during the day
  • creating and sharing clear information on new diabetes technology tools, including who is able to afford and use particular devices, details on insurance coverage, and what options exist for those who aren’t insured

“I think the educational component is key,” Ebekozien said. “It’s needed, and we need to continue talking about practical solutions to move the needle on addressing these disparities.”