News Feature | October 8, 2014

Hackers Develop DIY Remote-Monitoring For Diabetes

By Chuck Seegert, Ph.D.

To deal with childhood diabetes and keep on top of a disease that could turn deadly at a moment’s notice, parents have resorted to hacking medical devices. By creating solutions that help them manage their children’s disease, these innovative parents could push the medical device world in a new direction.

Many millions of Americans suffer from Type 1 diabetes, a disease that requires close monitoring of insulin. Matching insulin levels to carbohydrate consumption is an activity that must be constantly maintained. Elevated sugar levels can lead to frequent urination and dehydration, while sugar levels that are too low can cause seizures, coma, and even death. This balance is particularly sensitive in childhood diabetics who have much smaller bodies and are less aware of how sensitive their disease can be.

Because of the challenges of maintaining blood sugar levels with children, parents recently took the initiative to give themselves another level of monitoring and control, according to a recent Wall Street Journal (WSJ) article. Jason Adams, whose eight year old daughter has Type 1 diabetes, was concerned about monitoring her blood sugar at night. Without the ability to monitor her condition, he was forced to keep her home, which prevented her from attending sleepovers with friends.

Jason’s daughter Ella uses a Dexcom Inc. glucose monitor, a device that takes blood sugar readings every five minutes, according the WSJ. Unfortunately, however, the monitor has no provision for sharing data over a network. A little internet searching revealed to Jason a system called “NightScout,” a remote-monitoring software developed by other parents of diabetic children.

The developers of NightScout, who happen to be software engineers, were frustrated with the limited capabilities of current diabetes monitoring technology. According to the WSJ, the open-source software enables parents to hack the Dexcom glucose monitor and upload its information to the Internet. Two weeks after getting the software setup at home, Ella was able to attend her first sleepover.

Other notable successes have occurred as well, according to the WSJ. Kristin Derichsweiler, a nurse and single mother of four, downloaded the software and started using it to help her 15 year old son manage his diabetes. While at work, she noticed his blood sugar dropping to dangerously low levels. When he failed to answer the phone, she rushed home to find he had become unresponsive and needed juice to restore proper sugar levels.

Despite the successes, there is justified concern from the FDA. Coming to rely on an untested technology could lead to a potentially deadly false sense of security. Questions that are raised by the FDA related to NightScout center around how users may get support if they run into problems, and how to keep data confidential on the Internet. While questions are raised, the agency is making efforts to facilitate the new software and the parents who are using it.

"These parents are clearly crying out for ways to access their children's devices in a way that isn't available," said Courtney Lias, an official from the agency's Center for Devices and Radiological Health, in the WSJ article.

The cybersecurity of medical devices took main stage very recently when the FDA released its cybersecurity guidance document to medical device manufacturers. Changing software in ways that haven’t been rigorously tested could lead to significant patient harm, a scenario the FDA is trying to prevent.