Type 1 diabetes

Benefits of DIY diabetes technology creates a loyal community of ‘loopers’


Open-source or ‘do-it-yourself’ artificial pancreas systems (APS)  are here to stay regardless of the pace of development and approval of commercial systems.

That’s the collective opinion in a study of 23 Australian adults with type 1 diabetes who have already elected not to wait and instead gone down the DIY ‘loopers’ route.

Semi-structured interviews with the participants revealed they anticipated that commercial HCL devices would become much more common in the future – providing more choices for people with type 1 diabetes.

“However, for these systems to become more mainstream, participants perceived that there would need to be faster regulatory approval processes and considerable subsidies for insulin pumps and continuous glucose monitors,” the study authors said.

Of interest, participants believed that open-source systems were more advanced than currently available commercial options and some said they would never swap to a commercial device.

Other participants said they would transition to a commercial system in the future “if it was an improvement on how they were currently managing their diabetes, was under warranty and easier to use.”

“At present, and for the foreseeable future, participants perceived that open- source APS was their best option.”

The study, published in Diabetic Medicine, said compelling and advantageous features of the DIY systems included compatibility and interoperability, user-led design, ability to evolve faster, customisability enabling more personal control, and ‘real-time’ 24/7 community support.

“Many of these benefits were due to open-source APS not being constrained by the regulatory approval process,” the study said.

It said participants felt commercial companies could in fact benefit by learning from the DIY community and that a co-design process would help improve products.

“Participants believed that the commercial companies should collaborate with and learn from people in the open-source community. They believed these people deserved to be employed and paid for the work that they were already doing for free. Employing these people would improve outcomes for the companies and for people with diabetes.”

First author Jasmine Schipp, a research assistant at the Australian Centre for Behavioural Research in Diabetes and a PhD candidate at Deakin University and the University of Copenhagen, told the limbic the DIY-ers were a diverse community with different opinions and needs.

“Most of them are everyday people who are just struggling to manage their diabetes in the way that they want to. They feel that the current commercial devices aren’t doing everything that they want and they have found a way to do that.”

“They feel that the open-source artificial pancreas systems are more advanced than the current options available to them and they feel they have several features that are of value especially being able to customise the glucose targets or the fact that they are interoperable with different devices.”

She said health professionals were becoming more supportive of the #WeAreNotWaiting movement.

“What’s important to remember is the Diabetes Australia position statement has said that even though health professionals might not condone this or recommend it, they still do have a responsibility to make sure everyone with diabetes is getting the support that they need.”

She added that co-design of diabetes technology appeared to be improving.

“I think it’s a great thing to see but at times, consumers might feel it is tokenistic and that they are not as involved as much as they would like to be. It would be great to see people being involved at every step in the process.”

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