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Title: Health Activism and the Logic of Connective Action. A Case Study of Rare Disease Patient Organisations
Authors: Vicari, Stefania
Cappai, F.
First Published: 21-Mar-2016
Publisher: Taylor & Francis (Routledge): SSH Titles
Citation: Information, Communication & Society (Online First)
Abstract: This exploratory work investigates the role of digital media in expanding health discourse practices in a way to transform traditional structures of agency in public health. By focusing on a sample of rare disease patient organisations as representative of contemporary health activism, this study investigates the role of digital communication in the development of (1) bottom-up sharing and co-production of health knowledge, (2) health public engagement dynamics and (3) health information pathways. Findings show that digital media affordances for patient organisations go beyond the provision of social support for patient communities; they ease one-way, two-way and crowdsourced processes of health knowledge sharing, exchange and co-production, provide personalised routes to health public engagement and bolster the emergence of varied pathways to health information where experiential knowledge and medical authority are equally valued. These forms of organisationally enabled connective action can help the surfacing of personal narratives that strengthen patient communities, the bottom-up production of health knowledge relevant to a wider public and the development of an informational and eventually cultural context that eases patients’ political action.
DOI Link: 10.1080/1369118X.2016.1154587
ISSN: 1369-118X
eISSN: 1468-4462
Version: Post-print
Status: Peer-reviewed
Type: Journal Article
Rights: Copyright © Taylor and Francis, 2016. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Permission is granted subject to the terms of the License under which the work was published. Please check the License conditions for the work which you wish to reuse. Full and appropriate attribution must be given. This permission does not cover any third party copyrighted material which may appear in the work requested.
Appears in Collections:Published Articles, Dept. of Media and Communication

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