Following Twitter conversations around hacked diabetes tools to manage blood sugar
The diabetes online community is leading grassroots efforts focused on accelerating the development, access and adoption of diabetes-related tools to manage the disease. Researchers at University of Utah Health examined the community’s online Twitter conversation to understand their thoughts concerning open source artificial pancreas (OpenAPS) technology. The results of this study are available online in the September 10 issue of the Journal of Diabetes Science and Technology.
“There is a large community that is actively exploring how they can manage their diabetes using off-label solutions,” says Michelle Litchman, Ph.D., FNP-BC, FAANP, an assistant professor in the College of Nursing at U of U Health and first author on the paper. “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 created out of a need for better solutions.”
For the diabetes community, OpenAPS has been touted as an ideal technology for managing their illness. The off-label technology combines an off-the-shelf continuous glucose monitor (CGM) and insulin pump that interact to minimize glucose variability.
Before the Food and Drug Administration (FDA) approved the first technology to bridge these two devices in 2017, the community took matters into their own hands. They hacked into current CGMs and older insulin pumps and developed open source code to get the two devices to speak to one another, creating an OpenAPS. By crowdsourcing their code hacks, the community has improved this approach for blood sugar management.
Litchman and colleagues followed the #OpenAPS hashtag on Twitter to understand how the community is discussing this option.
After surveying more than 3,000 tweets using the #OpenAPS hashtag, generated by more than 300 participants from January 2016 to January 2018, Litchman found five overarching themes circulating around the community.
- With OpenAPS, self-reported A1C and glucose variability improved.
- OpenAPS reduced the daily distress and burden associated with diabetes.
- OpenAPS is perceived as safe.
- Interactions with healthcare providers concerning OpenAPS.
- How to adapt OpenAPS technology for individual user needs.
To date, more than 700 diabetes patients are using OpenAPS to manage their diabetes.
