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.
In May 2013 and March 2015, actress Angelina Jolie wrote in the New York Times about her choice to undergo preventive surgery. In her two op-eds, she explained that − as a carrier of the BRCA1 gene mutation − preventive surgery was the best way to lower her heightened risk of developing breast and ovarian cancer. By applying a digital methods approach to BRCA-related tweets from 2013 and 2015, before, during, and after the exposure of Jolie’s story, this study maps and interprets Twitter discursive dynamics at two time points of the BRCA Twitter stream. Findings show an evolution in curation and framing dynamics occurring between 2013 and 2015, with individual patient advocates replacing advocacy organizations as top curators of BRCA content and coming to prominence as providers of specialist illness narratives. These results suggest that between 2013 and 2015, Twitter went from functioning primarily as an organization-centered news reporting mechanism, to working as a crowdsourced specialist awareness system. This article advances a twofold contribution. First, it points at Twitter’s fluid functionality for an issue public and suggests that by looking at the life story—rather than at a single time point—of an issue-based Twitter stream, we can track the evolution of power roles underlying discursive practices and better interpret the emergence of non-elite actors in the public arena. Second, the study provides evidence of the rise of activist cultures that rely on fluid, non-elite, collective, and individual social media engagement.
This paper shows how to carry out Quantitative Narrative Analysis (QNA) with different text analysis software (PC-ACE, Program for Computer-Assisted Coding of Events, and various CAQDAS programs, Computer-Assisted Qualitative Data Analysis Software: ATLAS.ti, MAXQDA, and NVivo). QNA is a methodological approach to narrative texts that exploits invariant properties of narrative (namely, a "story grammar", based on actors, actions, and their attributes) to make a statistical analysis of words possible. In comparing PC-ACE and CAQDAS, the paper leads the reader through the steps involved in setting up a grammar, in data entry, and in data query. A careful comparison of limits and possibilities of the two types of software will allow the reader interested in QNA to make an informed choice between a full implementation of QNA in a specialized but unknown software (PC-ACE) and a limited implementation in any of the widely used and popular CAQDAS programs.
Abstract. The study of new media use by transnational social movements is central to contemporary investigations of social contention. In order to shed light on the terrain in which the most recent examples of online mobilization have grown and developed, this paper combines the interest in the transnational dynamics of social contention and the exploration of the use of new ICTs for protest action. In specific terms, the study investigates how early twenty-first century social movement coalitions used Internet tools to build symbolically transnational collective identities. By applying a Hyperlink Network Analysis approach, the study focuses on a website network generated by local chapters of the World Social Forum, one of the earliest social movement coalitions for global justice. The sample network, selected through snowball sampling, is composed of 222 social forum websites from around the world. The study specifically looks at hyperlinks among social forum websites as signs of belonging and potential means of alliance. The analysis uses network measures, namely of cohesion, centrality, structural equivalence, and homophily, to test dynamics of symbolic collective identification underlying the WSF coalition. The findings show that in early twenty-first century transnational contention culture and place still played a central role in the emergence of transnational movement networks.
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