A study by US researchers examines Twitter conversations about a do-it-yourself (DIY) open source artificial pancreas systems (OpenAPS)
Recent advances in diabetes technologies are impressive – industry is working hard to make ‘closed-loop devices’ a reality – but studies to demonstrate safety and efficacy, and the regulatory processes to approve them for widespread use, are necessarily rigorous and slow.
In response, some people with diabetes are developing their own do-it-yourself (‘DIY’) solutions. One example of this is the development of OpenAPS. OpenAPS is open-source code that enables anyone with type 1 diabetes to build a simplified ‘artificial pancreas system’ (APS). Closed-loop devices (including APS) mimic the workings of a healthy pancreas, by adjusting insulin levels based on how much glucose is in the bloodstream. OpenAPS does this by enabling insulin pumps and continuous glucose monitors to “talk” to each other. Insulin is then dosed automatically according to the person’s glucose levels. OpenAPS systems must be self-built, and there are online communities in which people using their own DIY systems share their experiences with others.
Dr Michelle Litchman (University of Utah) and colleagues collaborated with Dana Lewis (one of the developers of OpenAPS) to analyse tweets that used the hashtag #OpenAPS. Using a social media analytics tool called Symplur Signals, the authors were able to identify who had written the tweets (e.g. a person with diabetes, a healthcare professional) and where they were located. Tweets written by people with diabetes and their partners or carers were included in the analysis. Tweets from other stakeholders (e.g. healthcare professionals, the study authors), or those not written in English were excluded from the analysis. The authors identified 3,347 tweets over a two-year period that used the hashtag #OpenAPS. They were written by 328 people from 92 countries.
Five main concepts were discussed in the tweets:
- OpenAPS improves blood glucose levels: OpenAPS users reported that their HbA1c has improved, with some people stating that it was the best it had ever been. People also stated that they spent more ‘time-in-range’ (the percentage of time that blood glucose levels are in target range).
- OpenAPS reduces diabetes burden and improved quality of life: People reported experiencing less diabetes distress, as they did not have to spend as much time thinking about their diabetes management. Using OpenAPS enabled people with diabetes to sleep better, and to enjoy activities such as playing sports, eating out and travelling.
- OpenAPS is perceived as safe: People stated that they trust the in-built safety measures of OpenAPS. However, currently only older models of insulin pumps work with OpenAPS, and some people raised safety concerns about using out-of-warranty pumps.
- Healthcare professionals’ reactions to OpenAPS: People described mixed reactions from healthcare professionals to their use of OpenAPS. While some healthcare professionals were supportive, others were resistant to the idea, or frustrated that they did not know about it.
- The importance of peer support: Some people discussed challenges and asked for technical assistance. People were grateful for the support offered by their peers. One user spoke about “the kindness and generosity of the #OpenAPS community”.
Overall, tweets were mainly positive, and suggest that OpenAPS is safe and effective, improving both blood glucose levels and quality of life. However, a few negative issues were raised, such as a lack of support from healthcare professionals, and safety concerns about using out-of-warranty pumps. This research highlights some of the benefits and challenges of using OpenAPS, and the importance of the online community in this movement.
Interested in learning more about hybrid-closed loop (HCL) systems? Read about our research on an Australian trial of a HCL system, and our interviews with participants in that trial.
Litchman ML, Lewis D, Kelly LA, & Gee PM. Twitter analysis of #OpenAPS DIY artificial pancreas technology use suggests improved A1C and quality of life. Journal of Diabetes Science and Technology, 2018; doi.org/10.1177/1932296818795705
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