Rebelling with Care Exploring open technologies for commoning healthcare

Cangiano, Serena and Romano, Zoe and Fragnito, Maddalena and Graziano, Valeria (2019) Rebelling with Care Exploring open technologies for commoning healthcare. In: Cangiano, Serena and Romano, Zoe and Fragnito, Madddalena and Graziano, Valeria, (eds.) WeMake. ISBN 978-88-944612-0-6

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Abstract

he publication Rebelling with Care is the result of the research and dissemination activities carried out by WeMake within the framework of DSI for Europe, a project supported by the European Commission to reinforce the network of organizations using technologies to make a positive impact on society. The DSI paradigm revolves around key concepts such as open codes and data, co-design, collaboration and social impact. Since January 2018, we have reflected upon the traction these terms could have specifically in the field of health and care practices, starting with a map of the current DSI ecosystem and an informal learning journey that has involved citizens, policy-makers, professionals and institutions. What does it mean to develop bottom-up innovation, which is community-driven and built upon the commons, in a sector that is struggling to meet the needs of a growing and aging society, that is ruled by obsolete bureaucracies, and that is limited by proprietary technologies and top-down procedures? We have tried to answer these questions through seven articles and seven practices that show in concrete terms the contours of the emerging and diverse new modalities of dealing with the health and care challenges of today by leveraging the empowering potential of digital technologies. In the context of this research, we came to define these different modalities, which often emerge from the strong personal needs of the people directly impacted by a specific condition, as “rebel practices”. This is because in the vast majority of cases, these practices simultaneously operate outside a market logic without asking for the full permission of official institutions, with the purpose of provoking them to change or filling the gap left by who do not innovate, with due care, in the fields of health and care provisions. The rebellion of DSI practices in health and care then occurs within a framework that focuses on their impact beyond profit, rather than evaluating their scalability according to the levels of participation and empowerment of those affected. The practices encountered in our mapping all emphasize openness, co-design and the commoning of resources and knowledge. When technologies are involved, these are used to activate new processes and reduce superfluous costs, thus enabling more actors to contribute to the development of effective solutions by avoiding the social exclusion and conflicts of interest characteristic of the for-profit care model. We believe the approaches they put forward might prefigure a new role for the public sector as a partner for civil society, shaping common health and care provisions for all. Our selection of case studies aims to present a range of practices using technologies to collaboratively develop both products and processes of care. They are examples of how to find concrete answers to layered healthcare needs, beyond a mere techno-centric perspective, by using an open source process. Ranging from drones that deliver abortion pills to wearable sensors collecting data on vaginal infections, these case studies can help to clarify how this kind of DSI contains brave and novel approaches to care that can be both “pirate” and yet accountable to the collective, both collaborative and open to paradigmatic change.

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