A group of Twitter users with type 1 diabetes is leveraging the social media platform to share information on managing the disease with a do-it-yourself (DIY) open source artificial pancreas systems (OpenAPS), according to a study published in the Journal of Diabetes Science and Technology.
Researchers analyzed data from Twitter conversations among 328 patients, caregivers, and care partners who posted a total of 3,347 tweets over a two-year period containing the hashtag #OpenAPS. The overarching theme, according to the study, is that OpenAPS changes lives.
Open source artificial pancreas systems is a DIY combination of continuous glucose monitors (CGM) and older-style insulin pumps that allows these two devices to communicate with one another, making management easier for diabetes patients. The Food and Drug Administration (FDA) approved a hybrid of these two devices in 2017, but the diabetes community was ahead of the game, researchers found.
The other five themes of the #OpenAPS trend researchers noted were:
- OpenAPS use suggests self-reported A1C and glucose variability improvement
- OpenAPS improves sense of diabetes burden and quality of life
- OpenAPS is perceived as safe
- Patient/caregiver–provider interaction related to OpenAPS
- Technology adaptation for user needs
“As users of a patient-driven technology, OpenAPS users are self-reporting improved A1C, day-to-day glucose levels, and quality of life,” the study authors wrote. “Safety features important to individuals with diabetes are perceived to be embedded into OpenAPS technology.”
The most obvious drawback to the DIY OpenAPS is that it’s neither approved nor regulated by the FDA. Patients do not need a prescription to make it, so they do not have to consult with a professional about it. And the “hacked” insulin pump is no longer sold through the manufacturer, creating an opening in the black market for used items.
“There are some unknowns about this type of technology,” said study author Dr. Michelle Litchman. “While there are obvious benefits to many people who are using OpenAPS, there are some areas that may be concerning.”