“You Can’t Change What You Don’t Measure.”

Pediatric endocrinologist Mark Clements, MD, PhD, of Children’s Mercy Hospital in Kansas City sits on the IT subcommittee for the T1D Exchange Quality Improvement Collaborative. For this piece, he speaks to the importance of including the voices of people living with type 1 diabetes to improve care delivery and overall health outcomes.

As an endocrinologist, what do you see are the challenges facing the type 1 diabetes community?

To a great extent, I think that we know what works to help people with type 1 diabetes achieve great outcomes, but we don’t know how to help individuals with type 1 diabetes and their families be successful at doing all of those things because the burden is so large. How do we promote engagement with all steps of self-management to be successful? That’s the biggest challenge that our families face. There’s a degree of burnout for teens and families over that.

Is treatment of type 1 diabetes evolving to meet these challenges?

The technology has evolved, but one of the biggest changes is that we’ve brought formal quality improvement techniques into the clinic. We have leveraged these techniques to improve things like screening for depression among adolescents who have type 1 diabetes, increased compliance with the American Diabetes Association recommendations for foot exams, and increased access to retinal exams.

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Dr. Mark Clements

I think the other thing that is really nascent but that is making a difference for us is that, in our own clinic, we are beginning to apply what people refer to as AI (artificial intelligence) methods, namely advanced machine learning and natural language processing, to make outcomes predictions in diabetes care and to offer intensified pathways of care for individuals who we predict will experience an avoidable outcome, like worsening blood sugar control or hospitalization.

What stands out about the Collaborative?

We are a diverse and talented group of healthcare professionals, but I think that one of the things I’ve learned that really hadn’t occurred to me in the past, because I was so focused on designing research studies, was the powerful impact that individuals with type 1 diabetes and their families can make if we can bring them to the table and get their input. We definitely have heard their message through this network that we have to expand our attention beyond blood glucose and hemoglobin A1c outcomes.

Why is it important for clinics to track quality improvement progress?

You can’t change what you don’t measure. I think that medicine lags behind almost every area of business in using the data to gain useful insights to improve our practice. We need to go back to the drawing board to find out how we most effectively deploy the resources at hand to get the best outcomes for our families.

How do you think quality improvement changes will translate to daily lives of patients?

We’re not going to be able to keep up with the growing population of families with diabetes. There aren’t enough of us endocrinologists out there. More of our care is going to be supported by digital technology and communication methods. I think that more of our attention in quality improvement may be looking in the future at scalable ways that we can get diabetes education and problem solving skills in the hands of persons with diabetes or parents of youth with diabetes without requiring more personnel to do it. And I also just think that the attention that we’re paying to quality improvement care in the clinic is going to make people feel better about their care when they go home. It’s going to make them feel like they have a stronger therapeutic alliance with the healthcare team, and that they’re being heard.

To learn more about the T1D Exchange Quality Improvement Collaborative, click here.

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