John Costik got the call at the office in 2012. It was his wife, Laura, with terrible news: Their 4-year-old son, Evan, was headed into the emergency room.
His blood sugar reading was sky high, about 535 mg/dl, and doctors had discovered he had Type 1 diabetes. The first three days in the hospital were a blur during which the Costiks, engineers in Rochester, received a crash course in managing the basics of diabetes care.
For starters, they were told to log their son’s numbers on paper forms. It was their first hint that diabetes management did not occupy a place on technology’s bleeding edge. The methods for guesstimating carbohydrate intake also seemed imprecise, Mr. Costik found, and the process generated a lot of wasted data.
“The last thing you want to do is find some form and fill it out,” he said. “You’re really just emotionally trying to cope with it, and that data in that book isn’t necessarily useful to the people with diabetes.”
Several months later, Mr. Costik fitted his son with a Dexcom G4 continuous glucose monitor. A hair-thin sensor under Evan’s skin recorded an exact blood sugar reading at five-minute intervals, 24 hours a day.
But all that data left with Evan every morning when he headed off to day care. Mr. Costik wanted something better: continuous access to his son’s glucose readings.So he examined the device’s software code and wrote a simple program that transmitted the monitoring data to an online spreadsheet he could view on a Web browser, Android mobile phone or, eventually, his Pebble smartwatch.
“I wanted our lives to be simple,” Mr. Costik said, “and I wanted Evan to live a long time, and diabetes to be a nuisance, not a huge struggle.”
Mr. Costik shared a photograph of his simple hack on Twitter — and discovered a legion of parents who were eager to tailor off-the-shelf devices into homemade solutions. Together, they have set in motion a remarkable, egalitarian push for improved technology to manage diabetes care, rarely seen in the top-down world of medical devices.
In 2014, the last year for which data is available, the Centers for Disease Control and Prevention estimated that 29 million adults were living with diabetes. Of these, 5 to 10 percent had Type 1, which develops when the body’s immune system destroys pancreatic beta cells.
Now, as consumer gadgets weave themselves ever more tightly into everyday life, patients and their families are finding homespun solutions to problems medical-device manufacturers originally did not address. Industry executives say the pace of user-driven innovation was one reason the Food and Drug Administration recently reclassified remote glucose-monitoring devices, hastening approval for new models by big companies like Dexcom and Medtronics.
James Wedding, a civil engineer who lives outside Dallas, saw Mr. Costik’s Twitter post and used his code to set up a remote monitor system for his daughter, Carson, who is now 12.“Once I got all the pieces together, I remember crying — not quite in sadness, just in utter amazement — the first time I could see her numbers displayed on my computer screen and she was on the other side of the house,” Mr. Wedding said.