Based on O’Donnell, S. & Quigley, M ‘Transformations in Diabetes Care: Lessons From Commons-Based, Peer-Produced Citizen Science‘ in Sociology of Health & Illness (2026) 48(2): e70140.
What if life-critical medical technology was treated as a shared resource—created and collectively governed by the patients who rely on it? In an article, recently published in Sociology of Health and Illness, we explore this very question, drawing on our research of the WeAreNotWaiting movement.
For over a decade, this self-organized community of people with diabetes has co-created medical software that is not only life-critical but often more responsive to patient needs than the offerings of leading medical device companies.
The Healthcare Commons
Drawing on the work of David Bollier and Silke Helfrich, we argue that WeAreNotWaiting offers a blueprint for the practice of commoning in healthcare.
A ‘commons’ emerges when a community comes together to co-create and manage a resource essential for their survival, often as a response to structural failures within markets and state institutions.
In this case, the movement was born from the inability of the medical device industry to prioritize the daily, lived reality of those with type 1 diabetes over proprietary interests and slow-moving regulatory cycles.
An Alternative Innovation Ecosystem
Our research describes how the movement built a successful alternative by adopting pro-social behaviors such as:
- Generous knowledge-sharing over proprietary siloes.
- Open-source tools that anyone can adopt, modify, and improve.
- Eschewing strict hierarchies in favor of distributed, collective governance.
Why This Matters for Healthcare in the 21st century
The WeAreNotWaiting movement has not only transformed the lives of those who use these tools—it has had a demonstrable impact on the wider diabetes landscape. Today, we see device vendors actively incorporating the community’s expertise to improve the performance of their own products.
We conclude by proposing that shifting from 20th-century top-down models toward a commons-centric healthcare system is essential for meeting the increasingly complex needs of the people it serves in 2026 and beyond.
Written by: Shane O’Donnell
Funding: Work on this was generously supported by the Wellcome Trust (Grant No: 212507/Z/18/Z), the European Union (101064383), and Research England Quality-related Funding.