Researchers at the ACBRD interviewed people with type 1 diabetes to hear about their experiences
By Jasmine Schipp [1]
The human pancreas makes insulin and adjusts glucose levels. But people with type 1 diabetes need to inject insulin because their pancreas does not work properly. They have to make many decisions every day. These include how much insulin they need, when to inject and how to deal with highs and lows. This can be stressful and overwhelming.
Insulin pumps [2] and continuous glucose monitoring systems [3] can help people to manage their diabetes. Until recently, these diabetes devices could not ‘talk’ to each other or make these decisions. People were tired of waiting for a solution. So, they created their own software and made an open-source artificial pancreas system [4] (APS). An open-source APS does not replace the human pancreas. However, it can make decisions about how much insulin a person needs.
People using open-source APS report a number of benefits. They think less about their diabetes, they sleep better, and they have safer glucose levels. However, there are also challenges. It can be hard to find the hardware they need. Some people struggle with the technical aspects. The software is not approved by regulatory bodies, which means that health professionals cannot endorse it. Some research has been published on the challenges. However, not much is known about how people overcome these challenges.
Our Study
We interviewed 23 Australians using open-source APS. We asked about their experiences, and how they overcame any challenges.
We found 4 key ways that people deal with these challenges:
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- Peer Support: This was described as very helpful. People find it easy to access, as it is available online ‘24/7’.
- Self-sufficiency: People had to learn how to manage their system by themselves. Some found this empowering. One person said, “in 34 years, it’s the very first time that I’ve felt absolutely in control of what’s happening”.
- Risk management: People carried back-ups in case anything went wrong. Although open-source APS is not made by a medical company, participants do not think of it as unsafe. In fact, some believe it is safer because the person builds it for themself and wants to be safe.
- Trade-offs: People currently using open-source APS believe that the pros outweigh the cons. They are hopeful about their future. Overall, they feel that it is “all worthwhile”.
Our study shows how people using open-source APS are dealing with the challenges. They are no longer relying on industry or health professionals to provide the solutions they need – and this is empowering. Participants would like health professionals to know more about these systems and to be more supportive.
Since we completed this research
More studies are underway on people’s experiences with these systems. Studies have also been conducted with health professionals. Diabetes Australia [5] has published a statement [6] on this issue. It does not endorse these systems but supports the idea that people with diabetes should continue to receive support and care from health professionals regardless of how they manage their condition.
Schipp J, Skinner T, Holloway EE, Scibilia R, Langstrup H, Speight J, Hendrieckx C. How adults with type 1 diabetes are navigating the challenges of open-source artificial pancreas systems: a qualitative study. [7]Diabetes Technology & Therapeutics (published online ahead of print)
To read more about research on open-source artificial pancreas systems, check out our previous blogs on this topic:
We have joined the OPEN project! [8]
What are people discussing about #OpenAPS on Twitter? [4]
The latest in diabetes technologies and treatments [9]
Photo by Renza Scibilia via Diabetogenic [10].