JDRF launches its UK position statement on ‘DIY’ technologies

Posted on 19 February 2019

Glucose percentile report - type 1 diabetes and DIY technology

JDRF is setting out its UK position on ‘do-it-yourself’ (DIY) medical technologies, which some people with type 1 diabetes are creating.

The process, in which people with type 1 diabetes build systems to fully automate insulin delivery, is on the rise and enabling more and more patients to become experts at managing their condition.

DIY tech involves using computer algorithms to turn a current insulin pump and continuous glucose monitor (CGM) into a closed-loop system. JDRF cannot endorse DIY tech because it is unregulated, but respects the need for people with type 1 diabetes to be able to choose treatments that work best for them.

JDRF acknowledges the important role healthcare professionals play in the management of a person’s type 1 diabetes and believes enhanced legal and reputational protection will be important in order for those healthcare professionals to care for patients who choose to use DIY systems.

Read the JDRF UK DIY Technology Position Statement.

It is estimated that over 100 people with type 1 diabetes in the UK are creating their own treatment systems and this is rapidly rising, as more and more tech-savvy people with type 1 diabetes are inspired by the #wearenotwaiting DIY movement.

The DIY method involves automating the delivery of insulin from an insulin pump as and when the body needs it, in the same way as Professor Roman Hovorka’s artificial pancreas – which is currently in advanced clinical trials at the University of Cambridge. Such trials are a prerequisite for regulatory approval.

Members of the DIY community feel strongly that they should not have to wait for approved devices to become available. But currently, healthcare professionals do not have the medical indemnity to support patients using devices in a way that they were not regulated for.

JDRF is aware that some people find they are getting such good results that they are not concerned about the lack of support, while others feel frustrated that they are unable to get their healthcare team’s help.

Professor Roman Hovorka’s artificial pancreas research has shown a significant body of evidence why automated insulin delivery is so important. While JDRF continues to fund this research, it is committed to working with people with type 1 diabetes, device manufacturers and regulators through its Open-Protocol Initiative to allow more personalisation of diabetes technology.

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