First guidance issued for supporting patients with DIY artificial pancreas technology

A team of around 40 healthcare professionals and legal experts have issued guidance for type 1 diabetes patients using ‘Do-It-Yourself’ artificial pancreas technology to manage their condition.

According to King’s College London, whose academics co-led with Guy’s and St Thomas’ NHS FT on the recent paper published in The Lancet Diabetes & Endocrinology, the guidance “sets out recommendations that allow health-care professionals to support DIY artificial pancreas systems as a safe and effective treatment option” for the condition.

The work has been endorsed by nine professional diabetes organisations, such as the International Diabetes Federation, and explains that around “10,000 people worldwide” are swapping traditional and time consuming monitoring – which can involve taking multiple blood samples from fingertips a day and calculating injections of insulin – for “different approaches” like open-source Automated Insulin Delivery (AID) systems.

The systems “automatically adjust insulin dosing in response to continuous sensor glucose, insulin pump data and additional information using community generated algorithms”, and enable the calculation and administering of doses automatically through insulin pumps.

King’s College London notes that some commercial versions of these systems have been approved by regulators but that they can be expensive and hard to access, while up to 1,000 NHS patients are expected to benefit from a pilot of similar closed loop technology, following an announcement in June 2021. However, it adds that patients are increasingly turning to DIY systems that “have been co-created by people living with diabetes”.

These are not yet regulated, so the new paper “provides professional validation and clear recommendations for their use” and recommends that “clinicians work with individuals living with diabetes or their caregivers to ensure safe and effective use of these systems”, as well as offering guidance on how to achieve this.

Study co-lead Dr Sufyan Hussain, a consultant diabetologist and honorary senior lecturer from King’s, who the college notes has had type 1 diabetes for over 30 years, said: “The medical and legal position of do-it-yourself and citizen science approaches have been subject to a lot of debate and uncertainty. This paper not only clarifies the position for do-it-yourself artificial pancreas systems in diabetes as a safe and effective treatment but sets a precedent for achieving an international professional consensus for other treatments based on user-driven do-it-yourself technologies and innovations.”

Hilary Nathan, Policy and Communications Director for JDRUK, the type 1 diabetes charity, added: “Dr Hussain’s work provides a new blueprint in developing an international consensus for healthcare guidance in the field of citizen and user development of health treatment technology.”