Landmark clinical agreement supporting DIY artificial pancreas systems is published

The paper, published in The Lancet Diabetes & Endocrinology sets out recommendations that allow healthcare professionals to support DIY artificial pancreas systems as safe and effective treatments for type 1 diabetes.

Traditional monitoring of type 1 diabetes involves taking blood samples from the fingertips several times a day and calculating precise injections of insulin to maintain blood sugar levels.

This can be a time-consuming and stressful method, but according to the paper’s authors, more than 10,000 people worldwide are choosing a different approach, and the number is growing.

The DIY systems, also known as open-source Automated Insulin Delivery (AID) systems, automatically adjust insulin dosing in response to continuous sensor glucose, insulin pump data and additional information using community generated algorithms.

It means that the algorithm can calculate the dosage and administer the dose automatically through conventional insulin pumps.

However, like other insulin-based treatments, these systems are not without risk, the paper warns. Historically, people living with diabetes had to do their own research on how to build and set up these DIY systems.

Citizen-led type 1 diabetes science

The DIY artificial pancreas is a product that has been created by people living with diabetes. These systems are not regulated, however today’s landmark paper provides professional validation and clear recommendations for their use.

The paper recommends clinicians work with people with type 1 to ensure safe and effective use of these systems and provides detailed guidance on how to achieve this

The study’s co-lead is Dr Sufyan Hussain, a member of JDRF UK’s Scientific Advisory Council, consultant diabetologist and honorary senior lecturer at King’s College London.  The paper was produced by King’s College London and Guy’s and St Thomas’ NHS Foundation Trust.

Dr Hussain says: “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.”

Dominic’s story

Dominic Nutt, 54 from South West London, was diagnosed with diabetes aged 15. He has a personalised algorithm that controls his glucose monitor and insulin pump automatically. He manages the process through a smartphone, putting in when he eats carbohydrates or exercises, as this affects his blood glucose.

He says: “I’m not a techie at all, but since I was diagnosed, I’ve always been excited to try the latest developments as soon as they’re available. A friend put me in touch with someone who could help me to personalise the algorithm to my diabetes and my insulin pump. I then worked with Dr Hussain who helped me to make it work for my diabetes and the technology I was already using.

It’s been a revolution and a revelation. The swings in my blood sugar have gone. I used to have severe hypos needing emergency care about once every six months – my kids got used to having to talk to the paramedics. Now that never happens, my blood sugar is under control, which has wider health benefits as well, plus I’m feeling fitter and stronger, and I don’t have to eat as much sugar to control my blood sugar.

The emotional weight that has been lifted is huge. I still have to think about my diabetes sometimes, but it’s not the daily grind it used to be. It’s exciting that now there’s more of an opportunity for others with diabetes to get the kind of personalised advice that I’ve had.”

JDRF welcomes DIY artificial pancreas consensus

Hilary Nathan, JDRF UK’s Director of Policy and Communications said: “JDRF UK welcomes this international consensus which is profoundly important to people who use the Do-It-Yourself artificial pancreas to manage their type 1 diabetes.

This international guidance has wider implications: citizen-led science has been shown to up-end the traditional treatment pathway which is usually research trials, followed by regulatory approval, followed by clinical guidance and then patient uptake.

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.”

Read the Lancet paper.