‘Citizen scientists’ collaborate to improve access to care for T1D

A group of researchers who analyzed more than 3,000 tweets related to OpenAPS have found the DIY diabetes management solution to be a positive force in the type 1 diabetes (T1D) community, despite its lack of approval from the FDA or other federal organizations.

The project, headquartered at University of Utah Health in Salt Lake City, studied the efficacy of OpenAPS, an off-brand technology created by diabetics that combines an off-the-shelf continuous glucose monitor (CGM) with an insulin pump to monitor and minimize glucose variability. More than 700 T1D patients use the approach to manage their illness.

“There is a large community that is actively exploring how they can manage their diabetes using off-label solutions,” Michelle Litchman, PhD, FNP-BC, an investigator on the study and an assistant professor in the College of Nursing at U of U Health, said in a release. “Healthcare providers, industry and the FDA need to understand the wants and needs of people with diabetes in order to better serve them.”

OpenAPS was born out of “a need for better solutions,” Litchman said. Long before the FDA approved the first combined tech in 2017, the diabetic community was hacking into existing CGMs and insulin pumps, crowdsourcing an open source code that would allow the two devices to communicate.

Litchman and her team took to Twitter for their work, where they surveyed more than 3,000 tweets related to the #OpenAPS hashtag. The tweets were generated by a few hundred users between 2016 and 2018. 

It was clear from the community discussion that OpenAPS has improved diabetics’ approach to blood sugar management, since it automatically adjusts a pump’s insulin delivery to keep blood glucose in a safe range overnight and between meals. Self-reported A1C and glucose variability improved, and OpenAPS seemed to reduce daily stressors and burdens associated with T1D.

“Finding OpenAPS literally changed my life,” one user wrote. “My numbers have been astounding.” Another likened the service to having an autopilot on a plane, while others tweeted pictures of their numbers with captions like “Boring glucose is beautiful.”

OpenAPS seemed to be perceived as safe by the online community, Litchman said, but it remains unregulated. Patients don’t need a prescription to create or use OpenAPS, and they don’t need to be guided by a trained professional. In addition, she said, many of the insulin pumps previous users were able to hack are no longer available, potentially opening up a black market.

“There are some unknowns about this type of technology,” Litchman said. “While there are obvious benefits to many people who are using OpenAPS, there are some areas that may be concerning.”

She said that while the FDA and CGM and insulin pump manufacturers don’t back OpenAPS, the FDA is exploring the technology as an option for T1D management.

“Citizen scientists from all over the world are coming together to enhance existing diabetes technology,” Litchman said. “They are not waiting for solutions. They are making solutions to help themselves manage their diabetes with more ease.”