Periodic Reporting for period 1 - COMMONS (THE PATIENT LED COMMONIFICATION OF HEALTHCARE?’ the case of DIY-Diabetes: an ethnographic Study)
Período documentado: 2023-09-01 hasta 2025-12-31
Medical technologies have historically been the domain of private entities (e.g. the pharmaceutical industry) and public institutions (e.g. the NHS). However, this market-state model is being challenged by the emergence of self-organised patient communities who co-create their own medical technologies. The COMMONS project focuses on the so-called #WeAreNotWaiting movement, a community of people living with diabetes who modify existing diabetes management devices through open-source innovation. Over the last decade or so of its existence, members of the #WeAreNotWaiting movement have created a safe and effective set of life-critical medical technologies, known as open-source automated insulin delivery (OS AID) systems, for the management of diabetes. As such, the movement represents a unique case study in which to examine the affordances and constraints of commons-based peer production in contemporary healthcare and to critically examine its transformational potential. Through taking the #WeAreNotWaiting movement as its primary case study, the project seeks to examine how commons based peer production has the potential to transform the development and diffusion of healthcare technologies and the broader implications of this for equity in healthcare outcomes. It also the examines some of the challenges to the longer term sustainability of the community. The Fellow is conducting this work in close collaboration with his supervisors Profs Hélène Mialet at the Department of Science and Technology studies, York University and Susi Geiger School of Business, University College Dublin as well as Dr Bryan Cleal at the Steno Diabetes Centre, Copenhagen (SDCC) and Prof Muireann Quigley, Birmingham Law School, University of Birmingham.
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.
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.
COMMONS has made significant progress in adding to the sociological and STS scholarship with respect to the re-emergence of commoning in contemporary societies. Healthcare arguably lags behind other areas of application of commons-based theorizing. Through developing concepts such as the ‘diabetes commons’ and ‘medical technology provisioning’, this project has made an important contribution to scholarly research on healthcare commons. This is reflected in the publication of the first working-paper of the Fellowship entitled “Transformations in Diabetes Care: Lessons from Commons-based, Peer-produced Citizen Science” in Sociology of Health and Illness, a high ranking journal in the field of sociology. We anticipate further theoretical and conceptual contributions will be forthcoming through our work on cosmolocalism which will likely seed additional publications in prominent social science journals, as well as a conference and a special issue/ edited book.