At the T1D Exchange annual meeting, a leading endocrinologist painted a vivid picture of the future of type 1 diabetes care, and how he believes it will be fueled by instant and regular access to personal health data.
Dr. Mark Clements, a pediatric endocrinologist at Children’s Mercy Kansas City and Chief Medical Officer of Glooko, described how diabetes care stands on the precipice of potentially revolutionary change, and that it will take a leap into the unknown to tap into the explosion of patient health data to transform care.
Speaking at the Royal Sonesta in Cambridge, MA, he traced the improvement of diabetes care from the advent of insulin therapy and the rapid evolution of diabetes technology in recent years. However, Dr. Clements pointed out that we may have reached a plateau with centralized clinical care, as evidenced by recent studies showing blood sugar levels are not improving, despite the introduction of better diabetes technology.
“Our glycemic control, hemoglobin A1c outcomes, are not improving. We’ve had a lot of innovation, a lot of new devices, a lot of scientific inquiry, and we’re stuck,” Dr. Clements said. “When the system is not working for patients, we can’t try harder. We have to change the system.”
On the plus side, the recent wave of new technology, including the introduction of partially closed-loop insulin pumps and interconnected pump-and-continuous glucose monitor systems, opens up the possibility of new dimensions in diabetes care. Completely automated, closed-loop insulin delivery systems entering the market will allow patients and providers to focus on other, sometimes-neglected aspects of care.
“Now, for the first time ever, we’re going to have the time and energy for how we treat diabetes with diet in a way that works for people, how we treat it with exercise in a way that works for people, how we treat mental health and complications risk,” he said.
Dr. Clements, who works with a data-sharing platform in Glooko, firmly believes freed, accessible personal data will be the driver behind this transformation. In the past, all health and device data has been siloed and largely inaccessible for patients, and sometimes even for providers. Slowly, that has changed, as data is being made more accessible and health devices are being built with an eye toward interoperability.
In his opinion, that change is not happening soon enough, as there are still diabetes devices on the market and in production that do not share data automatically, or even at all. It’s not enough for data to be accessible and shareable between patient and providers; it must be easily and even automatically accessible and shareable.
“The data belongs to the person with diabetes,” he said. “(Data) must be mobile to promote individual autonomy and self-management…to promote a stronger therapeutic alliance with their multiple care teams,…and to support rapid innovation and autonomy.”
Dr. Clements is part of an attempt at institutional change in health care that is fueled by the sharing of data. His clinic is part of the T1D Exchange Quality Improvement Collaborative (QIC), a group of clinics working together with T1D Exchange to share information to innovate care and improve outcomes. To build the QIC, those involved first had to agree to share depersonalized patient data, and then make the standards of data uniform and easily shareable. Only then could the QIC members find ways to experiment with making measurable changes to improve care; those changes have helped clinics greatly improve rates of screening for depression and CGM use.
In the future, he hopes that shared data will help individualize care for people with type 1 diabetes and provide automatic nudges to help them better manage their care for all the time they are not in the clinic, which is most of their lives. The personal, human touch of clinical care will always be necessary, but it is just one piece of the puzzle of a more innovative, data-driven future of diabetes care, Dr. Clements said.
“It doesn’t mean that clinical care is irrelevant in the clinic, it just means that we have to figure out how to scale what we can do, because there aren’t enough endocrinologists out there to care for everyone,” he said.
The T1D Exchange Quality Improvement Collaborative has released a pragmatic guide of best practices, testable ideas, tools, and strategies to support improvements in depression screening. You can download it here.