Under the banner of #WeAreNotWaiting, diabetes patients and allies have been DIY-ing glucose monitoring and insulin delivery tech to create intelligent diabetes treatments. This has largely gone on outside official medical care, which could be an eyebrow-raising phenomenon in what’s generally such a highly regulated field.
However, a group of doctors and experts just gave the trend a big thumbs up. With some notes, of course.
Over 40 doctors, legal experts, and other healthcare professionals published a consensus statement in The Lancet Saturday affirming the tech and the “citizen science” involved.
“Health-care professionals have an important role in facilitating and supporting people with diabetes to obtain beneficial outcomes from AID [Artificial Insulin Delivery] systems,” the article’s conclusion reads. “Although we do not suggest that open-source AID systems be universally recommended over commercial options, strong ethical reasons support the use of open-source AID systems, with safety and effectiveness data derived from real-world evidence.”
Essentially, the experts say that people’s positive experiences with the systems they’ve created is enough for the medical industry to take these methods seriously, and to establish some standards and protocols for doctors and lawmakers to help further access and safe use.
The existing standard in diabetes treatments is a two step process of glucose level monitoring, and insulin injections. This is generally a lot of work, and maintaining recommended glucose levels is especially challenging at night when people with diabetes (or their caretakers) are, ya know, sleeping.
That’s where the DIY-ing comes in. People with diabetes wanted a way for the two components of treatment to communicate with each other, so that when glucose levels spiked, insulin could be automatically injected. So diabetes patients with technical knowhow made that communication system themselves, and published it as an open-source program that people could create and personalize themselves. The effect is the creation of an “artificial pancreas,” which is how some refer to the systems.
There are some commercial systems that do this, but they’re generally expensive and not available everywhere. That’s why the patients created the hashtag movement #WeAreNotWaiting, because they were sick of the slow-moving medical industry not putting algorithmic power to work in a widespread way.
Diabetes patients and advocates celebrated the publication on social media.
The review of available data and people’s experience shows that this use has improved care, reduced stress and anxiety, and improved sleep. Moreover, it supports individuals’ pursuit of treatments in a DIY way — within diabetes, and beyond.
The medical and legal position of do-it-yourself and citizen science approaches have been subject to a lot of debate and uncertainty,” Dr Sufyan Hussain, one of the study’s co-leads, said in a statement from Kings College London. “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.”
Or, to put that more plainly: The paper’s endorsement of patient-conceived, DIY treatment methods for this one specific condition could also energize the wider support for patient-driven treatment innovations in other areas of medicine.
