I've seen a lot of commons over the years, but I was amazed to learn about the #WeAreNot Waiting movement and its open-source automated insulin delivery (OS-AID) device for people with diabetes. This global movement of thousands of techies and allies created itself, and its device, through commoning, outflanking a stodgy, risk-averse medical device industry.
The homegrown OS-AID system consists of a continuous glucose monitoring sensor worn on one's body, an electronically connected insulin pump, and a smartphone app whose sophisticated algorithm automatically monitors glucose levels and delivers just the right amount of insulin needed, in near-real time.
Several things have made this remarkable achievement possible: the #WeAreNotWaiting movement's collaborative practices and open source ethic; the passionate creativity of key tech innovators and participating community members; and a massive database of biophysical data that people living with type 1 diabetes have assembled themselves.
The resulting system has been tremendously effective in helping people living with diabetes to treat their condition. Freed from having to make dozens of health-related decisions constantly to manage their glucose levels, the DIY device makes it far less stressful and dangerous to live with diabetes.
Beyond developing OS-AID, the patient-led peer production of medical technologies represents a new paradigm for how scientific research can be conducted. It's also a new archetype for how medical treatment can be made more humane through commoning. Participants report that they are able to get better, more engaged assistance through mutual aid than through medical device manufacturers, which happen to offer fairly good customer care.
The odyssey of the #WeAreNotWaiting movement is ongoing, however. After ten years of hard work, it now stands at a difficult inflection point. How can it fortify its commoning and expand access to its device, using commercial markets as needed, without ceding control to investors simply out to make a buck? Can the peer production paradigm avoid being co-opted, captured or eclipsed by the medical device industry?
Some volunteers in the #WeAreNotWaiting world welcome commercialization as the best way to make their insulin-delivery system more widely available. It could also help stabilize the lives of many tech developers and leaders in the community who are approaching burnout after years of heroic, intense work. While there is no magic answer, the future of patient-led open source innovation may depend on finding ways to financially support commoning practices without simply becoming a market player with all of its limitations.
I learned a lot about this world through my recent podcast interview with Shane O’Donnell, who spoke with me in Episode #44 of Frontiers of Commoning.Frontiers of Commoning. Himself living with diabetes, O'Donnell is a sociologist and researcher who has been at the forefront of "device activism," as it is sometimes called, for years. (European researchers Bianca Jansky and Henriette Langstrup originally coined the term in a 2023 article in BioSocieties.) Between 2019 and 2023, O'Donnell was a co-founder and coordinator of an EU funded project, OPEN, that documented the work of the #WeAreNotWaiting movement. He is currently a postdoc research fellow at York University in Canada.
With great resourcefulness, Dana Lewis pioneered the OS-AID system, assisted by close collaborators and the larger communities of people living with diabetes. The device allows insulin-dosing to be precise, constantly aligned with glucose levels, and automatic. The system design is openly available for free, and its open protocols make it interoperable with other systems. Remarkably, the FDA cleared Tidepool Loop, a program derived from Loop (a type of OS-AID), in January 2023.
The OS-AID is significant because most insulin-delivery devices sold by commercial manufacturers are closed and proprietary. They can’t be opened up by anyone to customize them to deliver insulin to an individual's body automatically.
Also, historically, commercial diabetes treatment had not "closed the loop," which means that people had to pay careful and constant attention to their glucose levels and to manually ensure that they receive just the right insulin doses at the right moments over the course of a day. This can be nerve-wracking, labor-intensive, and a matter of life and death if doses and timing aren't right.
The big advance of the OS-AID was closing the loop by electronically coordinating the continuous glucose sensor, the insulin pump, and the algorithm/app that regulates insulin flows. Closing the loop is seen as the best way to bypass the need for manual monitoring of glucose levels and interventions. The algorithm solves this problem by delegating treatment decisions regarding insulin dosage to an algorithm.This automates the process of insulin delivery based on a feedback-loop between a continuous glucose monitor (CGM) and an insulin pump.
The OS AID system is just one of many patient-led commons developing innovative treatments for various conditions. There is Helminth therapy and faecal transplantation for Crohn’s disease, for example, psychedelics for treatment of cluster headaches, and wearable devices for epileptic seizures. One might also point to the pioneering role of ACT UP in bringing patients, their friends and families, into the drug development process when AIDS drugs were first being introduced in the 1980s. Collaborations among patients can yield enormous benefits: passionate advocacy, intensive research, generous mutual care, political pressure.
The #WeAreNotWaiting movement has also helped develop Nightscout, a free and open source project that compiles glucose monitoring data from thousands of participating volunteers and makes it available in the cloud. This has greatly enhanced access and usability of the data, and in turn, the identification of needs and development of better treatments and device algorithms.
I'm eager to see how #WeAreNotWaiting moves ahead at this moment. I also hope that other patient-led commons arise to play an active, creative role in the development of better treatments and care.
You can listen to my interview with Shane O'Donnell here. For more information on the open source automated insulin delivery, check out the OPEN project website project website and the UCD Case Study Impact Award webpage. Also, see a video produced by Red Hat about patient-led open source innovation in diabetes care.