Research shows social media is beneficial for sharing and building upon patient experiences

Twitter, Facebook and other social media platforms can be useful tools for helping patients with rare medical diseases exchange knowledge and build communities, research led by Dr Stefania Vicari from the Department of Media and Communication 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 published in the journal Information, Communication and Society suggests.

The study entitled ‘Health Activism and the Logic of Connective Action. A Case Study of Rare Disease Patient Organisations’ 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 Vicari said: "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.”