Vicari, S. orcid.org/0000-0002-4506-2358 and Cappai, F. (2016) Health activism and the logic of connective action. A case study of rare disease patient organisations. Information, Communication & Society, 19 (11). pp. 1653-1671. ISSN 1369-118X
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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2016 The Author(s). Published by Taylor & Francis. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/ Licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Social Sciences (Sheffield) > Department of Sociological Studies (Sheffield) |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 23 Feb 2017 16:18 |
Last Modified: | 23 Feb 2017 16:18 |
Published Version: | https://doi.org/10.1080/1369118X.2016.1154587 |
Status: | Published |
Publisher: | Taylor & Francis |
Refereed: | Yes |
Identification Number: | 10.1080/1369118X.2016.1154587 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:112274 |