Social media useful for patients with rare diseases: study

Twitter, Facebook and other social media platforms can be useful tools for helping patients with rare medical conditions exchange knowledge and build communities, new research 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, researchers said.
The study by researchers at the University of Leicester in the UK 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.
"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," said Dr Stefania Vicari from the University of Leicester, who led the study.
"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," said Vicari.
The study was published in the journal Information, Communication and Society.