Experts Give Practical Guidance on DIY Artificial Pancreas for People With Type 1 Diabetes

NEW YORK (Reuters Health) – An international panel of more than 40 healthcare professionals and legal experts has published the first guidance to support people with type 1 diabetes using open-source automated insulin delivery (AID) systems – also known as do-it-yourself (DIY) AID systems – to manage their condition.

“The medical and legal position of do-it-yourself and citizen science approaches have been subject to a lot of debate and uncertainty,” co-lead author Dr. Sufyan Hussain of King’s College London, who has lived with type 1 diabetes for over 30 years, said in a news release.

“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,” Dr. Hussain said.

The paper, online now in The Lancet Diabetes & Endocrinology, has been endorsed by nine professional diabetes organizations including the International Diabetes Federation.

The uptake of DIY automated insulin delivery systems continues to increase globally, “with current estimates suggesting several thousand active users worldwide. Real-world user-driven evidence is growing and provides insights into safety and effectiveness of these systems,” the panel writes.

DIY systems use community-generated algorithms to automatically calculate insulin dose in response to continuous glucose monitoring, insulin-pump data and additional information. The goal of DIY systems is to reduce both low and high blood sugar, but can also improve glycemic and long-term health outcomes, reduce diabetes distress and burden, and improve sleep quality.

DIY systems co-created by people living with diabetes are not regulated. The consensus paper provides professional validation and clear recommendations for their safe use, the panel says.

“Although we do not universally recommend the use of open-source over commercial AID systems, we propose that the best interest of the individual should be balanced against the risks of using open-source AID systems,” the panel writes.

They recommend that clinicians work with patients to ensure safe and effective use of DIY systems and offer detailed guidance on how to achieve this.

Dominic Nutt, 54 from South West London, was diagnosed with diabetes at age 51. He has a personalized algorithm that controls his glucose monitor and insulin pump automatically, which he manages through a smartphone, entering when he eats carbohydrates or exercises.

“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,” he explains in the King’s College London news release.

“A friend put me in touch with someone who could help me to personalize 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. 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,” Nutt said.

Hilary Nathan, UK policy and communications director at the Juvenile Diabetes Research Foundation, said in the release, “JDRF UK welcomes this international consensus which is profoundly important to people who use Do-It-Yourself technology systems 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 traditionally 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,” Nathan added.

SOURCE: The Lancet Diabetes & Endocrinology, online November 13, 2021.

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