Plug-in healthcare:Development, ruination, and repair in health information exchange

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.<br/

Of blooming flowers and multiple sockets: infrastructure Integration and the Technological Imaginary

We analyze and discuss the use of two metaphors for integration work in the development of Zorgportaa

Integrating Users in an Interactive Video Education Project: Reframing the Patient-Centered Strategy of a Cystic Fibrosis Centre

This article reports on the formative evaluation of WebPEP (“Web-Based Patient Education Program”), an interactive video education project at ErasmusMC–Sophia Children’s Hospital (SCH) in Rotterdam, the Netherlands. Through monthly live webcasts, doctors, nurses, psychologists, and other healthcare professionals affiliated to SCH’s Cystic Fibrosis Team gave presentations on medical and psychosocial aspects related to cystic fibrosis (CF). These webcasts were first intended to educate and be educational to children between the ages of twelve and eighteen, but during the first year of the project they failed to attract this specific group. Instead, they generated unexpected enthusiasm among parents of young patients. The central question in this article is: How were patients “integrated” in the development of the WebPEP application? We show how the project’s initiator reacted to the lacking participation by prospective users: informed by the evaluation, he gradually shifted his attention from live interaction to the expansion of the video library, where the webcasts were stored for on demand viewing. Based on interviews and participant observations, we describe how the initiator reconfigured the WebPEP application and its users, and therewith reframed the CF Centre’s online patient education strategy. We discuss the importance of investigating the prospective and actual use of patient-centered e-health (PCEH) applications, and argue that a single technological artefact can be involved in different, coexisting practices of patient-centeredness. We conclude with a reflection on how formative research methods can contribute to the development of PCEH

Nøgletal for miljøfarlige stoffer i spildevand fra renseanlæg - på baggrund af data fra det nationale overvågningsprogram for punktkilder 1998-2009

__Abstract__ De inzet van eHealth, een verzamelbegrip voor informatie- en communicatietechnologieën in de zorg, kan bijdragen bij het faciliteren en borgen van veranderingen in de zorgverlening die noodzakelijk lijken om de groeiende zorgvraag op te vangen. Vanuit samenwerkingsverbanden tussen zorginstellingen en ICT-leveranciers zijn er in de afgelopen jaren veel eHealth-initiatieven in Nederland ontplooid, waaronder een groot aantal nieuwe internetportalen voor zorg, welzijn en gezondheid. Regionale patiëntportalen zijn een voorbeeld van dergelijke portalen, die zich van andere portalen onderscheiden door het samenbrengen van informatie en diensten voor inwoners van een bepaald (vooral geografisch) gebied. Omdat de ontwikkelin

Plug-in healthcare: Development, ruination, and repair in health information exchange

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

Of blooming flowers and multiple sockets:The role of metaphors in the politics of infrastructural work

We explore the role of two metaphors for innovation and infrastructure integration in the development of a regional patient portal. Our premise is that metaphors have real consequences for agenda setting and decision-making; we view them as operationalizations of sociotechnical imaginaries. Drawing on our formative study of the portal project, we focus on the generative character of metaphors and argue that they are constitutive elements of information infrastructures. While the two metaphors in our study helped to make imaginaries of ‘integrated’ and ‘personalized’ health care more definite, cognizable, and classifiable, they also concealed the politics of infrastructural work. We argue that the act of ‘spelling out’ metaphors can open up a space for new imaginaries and alternative strategies. With this study we aim to contribute to existing knowledge about infrastructural work, and to renew the interest among STS scholars for the role of discursive attributes in information infrastructures.Keywords: metaphors, e-Health, information infrastructure