THE PATIENT LED COMMONIFICATION OF HEALTHCARE?’ the case of DIY-Diabetes: an ethnographic Study

The aim of this project is to examine how commons-based peer production is impacting healthcare ecosystem dynamics and the lived experience of people with diabetes (PwD).

The project focuses on communities of PwD who, collaborating online via open-source forms of knowledge exchange, are increasingly empowered to create and modify diabetes technologies to better meet their medical needs.

Since its emergence in 2013, this patient-led commons has produced a range of innovations that can help improve clinical outcomes and quality-of-life.

However, these innovations sit outside of commercial and regulatory processes and create dilemmas for healthcare professionals, regulators and industry.

Furthermore, the central role of technology in this community has raised questions about who can participate in and benefit from its innovations.

Through in-depth interviews and ethnographic observations, this project aims to capture the understandings of key stakeholders as to how and why the patient-led commons came to be as well as their visions of its role in the future of diabetes care.

It ill shed light on how patient-led innovation is potentially transforming the development and diffusion of healthcare technologies and the implications of this for equity in healthcare outcomes.

It is anticipated that the findings will help decision-makers to determine what sort of collaborations or partnerships can be developed between the patient-led commons and established ecosystem players to address the needs of PwD and other chronic conditions.

The project includes a training programme supported by an international team of prominent scholars in science and technology studies and will provide opportunities for learning and networking that will help consolidate the Fellow as an emerging leader in patient-oriented research.

Overall, the Fellowship alligns with the EC’s commitment to the inducement, uptake and scaling-up of social innovation in Europe as well as 3,5&8 of the UN SDGs.