Posted on Monday 15 November 2021
Guy’s and St Thomas’ researchers have helped to write the first guidance of its kind to support people with type 1 diabetes using customised Do-it-Yourself (DIY) technology to manage their condition.
People with type 1 diabetes do not produce the hormone insulin, which controls blood sugar levels. Treatment can involve checking blood sugar levels several times a day and injecting insulin. In recent years, devices such as glucose monitors or insulin pumps placed under the skin have been prescribed by clinicians for some patients. These work automatically to adjust blood sugar levels.
The DIY systems use programmes and algorithms developed by the patient community to connect up these technologies. It means that the algorithm can calculate the dosage and administer the dose of insulin. Some systems are set up to connect with smartphones. Because these systems are community-led, they are unregulated, and so until now clinicians have had limited guidance on best practice.
Trust clinicians worked with a team of international researchers that included King’s College London, Stanford University, Charite and legal experts in technologies. They created guidance on working with patients who want to use these systems. The guidance was endorsed by professional diabetes organisations including the International Diabetes Federation.
Dr Sufyan Hussain works as a consultant diabetologist in Guy's and St Thomas' diabetes team, which looks after many patients who want to adapt systems to their personal needs and situation. He co-led on the development of the guidance.
He 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 clarifies the position for do-it-yourself artificial pancreas systems in diabetes as a safe and effective treatment. It also sets a precedent for achieving an international professional consensus for other treatments based on user-driven do-it-yourself technologies and innovations.”
One of the Trust's patients is Dominic Nutt, 54 from south west London. Dominic was diagnosed with diabetes aged 15. He has a personalised algorithm that works with his glucose monitor to control his insulin doses from his pump. He manages the process through a smartphone, putting in when he eats carbohydrates or exercises, as this affects his blood sugar.
He said: “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.”
A small number of commercial versions of these systems have been approved by regulators. Many of these work with limited devices that do not allow customisation. DIY systems are a product of citizen science that have been co-created by people living with diabetes.
At least 20% of DIY system users are children or adolescents. Many families and users find they improve quality of life, and allow carers to remotely monitor blood sugar levels. However, these systems are not without risk, and are unregulated. The paper recommends clinicians work with patients to ensure safe and effective use of these systems. It details guidance on how to achieve this.
Dominic says his own system has helped both his health and mental wellbeing. He said: “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.”