The overall aim of this research project is to answer the following question: what is the potential of commons-based peer production to fundamentally change healthcare ecosystem dynamics and the lived experience of patients? To answer this question, we examined publicly available statements (such as social media posts, blogs, podcasts, conference proceedings) made by relevant stakeholders (including leading members of the WeAreNotWaiting movement, industry and regulatory representatives and medical professions) to examine how the dynamics of the diabetes device landscape has been impacted by the #WeAreNotWaiting movement. In so doing, we developed the concept of the ‘diabetes commons’ as a means of understanding how the community established an alternative innovation ecosystem outside of formal healthcare systems which meets the needs of thousands of people with diabetes worldwide. We also highlight how promoting an open model of innovation and collaboration with industry has not only allowed the community to avoid enclosure but also transformed the diabetes device landscape in domains such as innovation, regulation, and healthcare practice. Our analysis also identified several threats to the sustainability of patient-led open source innovation and potential actions that might be taken by the community and broader stakeholders to overcome these challenges.
A significant output arising from this work is the Diabetes Data Rights Charter which is being co-led with members of the diabetes community and academic partners (Prof Muireann Quigley and Dr Bryan Cleal). The Charter will articulate a set of principles that key stakeholders should consider in order to enable PwD to, safely and securely, exercise control over their diabetes data. As such, the DDRC supports one of the key aims of the COMMONS project, namely to support the ability of the #WeAreNotWaiting movement to continue to innovate and sustain itself into the future.
In addition, our analysis has also opened up new line of research on how the commons may play a key role in addressing some of the broader dilemmas faced by formal healthcare systems in the 21st century. In particular, we propose that cosmolocalism – the re-localisation of production enabled through a global digital commons- can help retain advances in the treatment of life threatening chronic conditions such as type 1 diabetes in an era of rapidly tightening biophysical and ecological constrains.
