Twitter, Facebook and other social media platforms can be useful tools for helping patients with rare medical diseases exchange knowledge and build communities, research from the University of Leicester has found.
Patient experiences shared on digital platforms are also becoming a point of reference for other patients, sometimes in isolation of traditional medical sources, the study entitled 'Health Activism and the Logic of Connective Action. A Case Study of Rare Disease Patient Organisations' suggests.
The research examined online interactions in rare disease patient organisations in order to interpret how and to what extent patient organisations exploit online networking structures to provide alternative platforms for people to find information on and discuss health issues.
The study suggests that digital media eases one-way, two-way and crowdsourced process of health knowledge sharing; provides personalised routes to health-related public engagement; and creates new ways to access health information - particularly where patient experiences and medical advice are both equally valued.
Dr Stefania Vicari from the University of Leicester's Department of Media and Communication, who led the study, explained: "This project shows the potential of online communication tools for isolated patient communities and the extent to which patients' experiential knowledge is becoming a point of reference for other patients, together with - or sometimes in isolation from - traditional medical sources.
"These forms of organisationally enabled connective action can help to build 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.
"Not only is patients' knowledge valuable for peer support within patient communities, it has the potential to add to traditional medical knowledge, especially in cases where this is limited - such as in the case of rare diseases.
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.
1. Vicari S, Cappai F. Health activism and the logic of connective action. A case study of rare disease patient organisations. Information, Communication & Society, 2016; 1 DOI: 10.1080/1369118X.2016.1154587
Content updated 24 March 2016