Young people with severe diabetes must manage their disease hour by hour. Sometimes, preventing their glucose levels from soaring too high or dropping dangerously low requires scrutiny of blood readings on a nearly minute-to-minute basis.

Yet in this era of ubiquitous data and instant digital communication, diabetes physicians are still using visits to the clinic every three months to manage their patients with Type 1 diabetes. Formerly known as juvenile diabetes, Type 1 is the more severe form of the disease usually detected early in life and requiring lifelong daily insulin injections.

“Frankly, we see children in our clinic who are not in the best health that they could be in. And we have to do something different to improve our outcomes,” endocrinologist Dr. Laura Gandrud said. “We are not where we want to be in terms of the outcomes for these children.”

Work is underway at diabetes clinics and technology companies across the country to crack the problem of how best to manage diabetes, specifically Type 1, which happens when the immune system destroys the body’s ability to regulate blood sugar levels.

The institutions working on the problem include Gandrud’s employer, Minneapolis-based Children’s Hospitals and Clinics of Minnesota, which treats three-quarters of the children with Type 1 diabetes in the metro area, according to UnitedHealth Group.

Hour-by-hour trends

The nonprofit Children’s Minnesota health system is in the midst of a yearlong clinical trial with 113 children and teens to evaluate whether physicians monitoring patients’ hour-by-hour glucose trends each week — instead of each quarter — can save money and keep people healthier. The trial is leading a three-year, $6 million plan to build a new care model based on lessons learned from the study.

The extra monitoring of diabetes patients’ blizzard of stats can require a lot more work from physicians like Gandrud. It also adds new expenses, such as customized communications software from San Francisco-based start-up Welkin Health.

Keeping kids’ and teens’ glucose levels in check can cut overall spending on complications such as blindness and lower-limb amputation. The rub is that those savings come later in life, so they wouldn’t necessarily flow to a children’s hospital. So far, Children’s Minnesota is paying for much of the project though donations from individuals and financial support from Minnetonka-based UnitedHealth Group.

“Playing catch-up at the doctor’s office at quarterly or periodic visits is not the most effective approach, and can lead to uneven blood sugar levels, which increases the risk of developing complications,” a spokeswoman for the insurer wrote in an e-mail. “This approach also better connects patients and their families with physicians to improve communication and help patients better comply with their recommended treatment guidelines.”

Buying time for a ‘cure’

Such work has taken on a special urgency as a potential “cure” for the chronic condition draws closer. Vigilant monitoring of blood sugar levels may serve to keep kids as healthy as possible until future treatments involving stem cells or powerful medical devices can replace the manual grind of insulin injections that diabetics manage multiple times a day.

Full-blown clinical trials of stem-cell-derived diabetes therapies and advanced medical devices are underway. Medtronic, for one, is running a safety trial of an insulin pump system that can automatically adjust insulin doses based on real-time glucose readings. In March, researchers in the United Kingdom announced the discovery of the fifth and final type of molecule in the pancreas that is attacked by the immune system in Type 1 diabetes patients, potentially enabling new therapies and detection methods.

Type 1 diabetes happens when the immune system attacks and kills cells in the pancreas needed to make insulin, the hormone that causes the body to absorb and use glucose in the blood. That’s why patients have to regularly inject insulin and closely monitor factors such as diet and exercise that can affect blood sugars.

Using Fitbits and apps

At Children’s Minnesota, researchers are running a randomized, controlled trial to see whether doctors and patient families can communicate digitally on a weekly basis to analyze recent blood glucose trends and prevent the highs and lows that lead to problems.

The primary goal of the study is to see whether patients’ long-term average glucose levels improve, as measured by changes in glycated hemoglobin, or HbA1c, in the blood.

The website Clinicaltrials.gov lists secondary goals: lower health care use (such as phone calls to clinics or emergency room visits), and improvements in rates of depression, family conflict and pediatric quality of life, using standardized surveys.

Patients in the study wear Fitbit devices and use their insulin pumps and glucose monitors normally, then upload data from those devices on a weekly basis via a smartphone app for diabetes devices called Glooko or Medtronic CareLink Personal software. Doctors review the study data weekly and make recommended changes in variables such as the timing and dosing of insulin and lifestyle changes; patients in the control group continue with regular clinic visits.

‘I ended up liking it’

Sisters Grace and Sophia Brunstad of Farmington took part in a pilot stage of the study, since completed, to test the feasibility of uploading and viewing so much data at the hospital on a weekly basis.

“I wasn’t too excited about the study,” said Grace, 15. “It was like, great, another thing I have to do every day. But I ended up liking it. It was interesting — it was fun because, with the graph, I loved seeing how much green I could get. It really became a competition between me and my sister, who could get the most green.”

Their father, Mike Brunstad, explained that “green shows in-range numbers,” referring to the Glooko pie-chart display on the girls’ cellphones.

“And it’s a really pretty green,” said a smiling Sophia, 12. “Can I just say that? It’s not a puke-green or anything like that.”

The Welkin Health software that enables the data and the doctors’ orders to be transmitted securely via the cloud was invisible to the Brunstads — just as it should be, Welkin chief executive Chase Hensel said. The software also takes electronic medical record data and the records from e-mails, texts, chats and calls, and combines them into a single dashboard for the caregiver to analyze.

“You end up with enough insight into what’s going on in a patient’s life that you can be pretty intelligent about the kinds of [adjustments] you want,” Hensel said. “By the very nature of chronic conditions, something like this is necessary.”

The system under study at Children’s Minnesota is compatible with several brands of insulin pumps and glucose monitors, including some that have to be plugged in with cables to transmit and others that use a Bluetooth-enabled fob to automatically read and send data.

But the goal isn’t always to have more frequent interventions in diet or insulin. The Welkin system helps doctors locate those patients whose numbers are out of line, while filtering out those patients who don’t need to be communicated with quickly.

“If we can build a system that keeps [families] in control and makes it easy for them to stay in control, then we’ve solved one of the major problems that these kids and their families face,” said Jeff Weness, senior director of innovation and partnerships at Children’s Minnesota. “We hope that we can build a system here where the data is coming in in a way that we can intervene when they need us, and let them be when they don’t.”