Health activism and the logic of connective action. A case study of rare disease patient organisations

Vicari, Stefania; Cappai, Franco

doi:10.1080/1369118x.2016.1154587

Cited by 47 publications

(60 citation statements)

References 51 publications

(86 reference statements)

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“…Similar findings have been experienced in studies of ALS (Kazmer et al 2014) and Hyperemesis Gravidarum (Lowe et al 2009) as well as other rare genetic and chronic diseases (Van der Eijk M et al 2013). Vicari and Cappai (2016) refer to this as the logic of connective action; these digital mechanisms help to overcome information-seeking obstacles and allow the development of different forms of engagement which, as represented in our diagram above, is not a one-way channel.…”

Section: Resultssupporting

confidence: 82%

Co-creating a knowledge base in the “22q11.2 deletion syndrome” community

et al. 2019

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22q11.2 DS is characterised by its variability, rarity and variety of features ranging from congenital heart conditions to psychiatric and behavioural issues. As a result, health information-seeking behaviour is different from other more common conditions. An exploratory study was carried out to understand how parents access information and support, and how that information is shared. Qualitative interviews were carried out with families and support group representatives, and thematic analysis was applied. Four main themes emerged from our findings: perceptions of clinical expertise, parent empowerment, support group activities and community building via an Internet platform. Our thematic analysis enabled the construction of a possible model of informationseeking behaviour in parents and carers of children with 22q11.2 DS. We discuss the model and how the understanding of how information is shared and gathered can aid in clinical practice.

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Section: Resultssupporting

confidence: 82%

Co-creating a knowledge base in the “22q11.2 deletion syndrome” community

et al. 2019

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“…Intersubjective, internal criteria for evaluating knowledge and shared practices, patterns and readiness for action can be associated with problems and shared competences (Haas, 1992). In some cases, such shared, mutual competence in an online community has been found to bring about joint action in political contexts (Akrich, 2010;Bennett & Segerberg, 2012;Vicari & Cappai, 2016), especially when patient groups and their medical and other social communities are involved.…”

Section: Shared Expertisementioning

confidence: 99%

Becoming the expert constructing health knowledge in epistemic communities online

Bellander

Landqvist

2018

Information, Communication & Society

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From a discourse analytic framework, the article analyses health blogs and patient's forum discussions in which parents to children with congenital heart defects recontextualize medical professional knowledge and share their own experiences. The study show how the two types of online media may serve as a means for parents to attain expert status in their own case by sharing lay knowledge expressed as an amalgamation of the two key perspectivesprofessional and experiencedas an indivisible unit. Monological discourses, such as narrating, in blogs and more direct and immediate responses in forum discussions are noted as examples of differences in how medical facts are explained and negotiated, how advice is provided and how patient expertise is created. The study also show how blogs and especially forum discussions are used to problematize the validity of actions and opinions of medical staff. The role of developing patient expertise in epistemic communities online may therefore come with a risk of spreading misrepresentation of medical cases.

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“…The BRCA Twitter stream offers a significant case study to integrate temporality in the investigation of power dynamics in Twitter discursive practices. First, contemporary health communication research has highlighted the development of new active forms of patient engagement where patients—traditionally non-elite actors—often directly engage in the production of health knowledge ( Vicari & Cappai, 2016 ). A health issue–based Twitter stream makes then for a relevant case study to analyze the emergence of non-elites in discursive work.…”

Section: Research Questionsmentioning

confidence: 99%

Twitter and Non-Elites: Interpreting Power Dynamics in the Life Story of the (#)BRCA Twitter Stream

Vicari

2017

Social Media + Society

Self Cite

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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.

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Health activism and the logic of connective action. A case study of rare disease patient organisations

Cited by 47 publications

References 51 publications

Co-creating a knowledge base in the “22q11.2 deletion syndrome” community

Co-creating a knowledge base in the “22q11.2 deletion syndrome” community

Becoming the expert constructing health knowledge in epistemic communities online

Twitter and Non-Elites: Interpreting Power Dynamics in the Life Story of the (#)BRCA Twitter Stream

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