PhD defence M.J.C. (Marcello) Aspria

Summary:

This dissertation explores the work done by people and things in emerging infrastructures for health information exchange. It shows how this work relates to processes of development, production, and growth, as well as to abandonment, ruination, and loss. It argues for a revaluation of repair work: a form of articulation work that attends to gaps and disruptions in the margins of technological development. Often ignored by engineers, policy makers, and researchers, repair sensitizes us to different ways of caring for people and things that do not fit, fall in between categories, and resist social norms and conventions. It reminds us that infrastructures emerge in messy and unevenly distributed sociotechnical configurations, and that technological solutions cannot be simply ‘plugged in’ at will, but require all kinds of work. With that, repair emphasizes the need for more democratic, critical, and reflexive engagements with (and interventions in) health information exchange.

Empirically, this study aims to understand how ‘integration’ in health information exchange is done in practice, and to develop concepts and insights that may help us to rethink technological development accordingly. It starts from the premise that the introduction of IT in healthcare is all too often regarded as a neutral process, and as a rational implementation challenge. These widespread views among professionals, managers, and policy makers need to be addressed, as they have very real – and mostly undesirable – consequences. Spanning a period of more than ten years, this study traces the birth and demise of an online regional health portal in the Netherlands (2009-2019). Combining ethnographic research with an experimental form of archive work, it describes sociotechnical networks that expanded, collapsed, and reconfigured around a variety of problems – from access to information and data ownership to business cases, financial sustainability, and regional care. It puts a spotlight on the integration of standards, infrastructures, and users in the portal project, and on elements of collapsing networks that quietly resurfaced elsewhere. The reconstruction of these processes foregrounds different instances of repair work in the portal’s development and subsequent abandonment, repurposing, and erasure.

Conceptually, this study contributes to academic debates in health information exchange, including the politics of technology, practices of participatory design, and the role of language in emerging information infrastructures. It latches on to ethnographic studies on information systems and infrastructural work, and brings together insights from actor-network theory, science and technology studies, and figurational sociology to rethink and extend current (reflexive and critical) understandings of technological development. It raises three questions: What work is done in the development and demise of an online health portal? How are relations between people and things shaped in that process? And how can insights from this study help us to understand changing sociotechnical figurations in health information exchange? The final analysis includes five key concepts: the act of building network extensions, the method of tracing phantom networks, the notion of sociotechnical figurations, the logic of plug-in healthcare, and repair as a heuristic device.