Trending Now: DIY Management for Diabetes

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: 

  1. OpenAPS use suggests self-reported A1C and glucose variability improvement 
  2. OpenAPS improves sense of diabetes burden and quality of life 
  3. OpenAPS is perceived as safe 
  4. Patient/caregiver‚Äďprovider interaction related to¬†OpenAPS¬†
  5. Technology adaptation for user needs 

‚ÄúAs users of a patient-driven technology,¬†OpenAPS¬†users are self-reporting improved A1C, day-to-day glucose levels, and quality of life,‚ÄĚ the study authors wrote. ‚ÄúSafety features important to individuals with diabetes are perceived to be embedded into¬†OpenAPS¬†technology.‚Ä̬†

The most obvious drawback to the DIY¬†OpenAPS¬†is that it‚Äôs 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 ‚Äúhacked‚ÄĚ 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.”¬†

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Sources: Journal of Diabetes Science and Technology, EurekAlert, Futurism