Social Media Encourages Rare Disease Patient Engagement

Sites like Facebook and Twitter allow patients with rare diseases to share their experiences.

Social media platforms such as Twitter and Facebook can be more beneficial for patients with rare diseases who can share experiences and knowledge, a recent study indicates.

Using social media sites allow for patients to share knowledge, interact, and build communities more easily compared with traditional medical sources.

“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 study leader Stefania Vicari.

A study published in Information, Communication and Society analyzed online interactions in rare disease patient organizations.

Researchers wanted to determine how patient organizations exploit online networking structures and to what extent they do so, in order to provide alternation platforms for patients to discuss health-related issues and gather information.

The results of the study suggested digital media is able to ease 1-way, 2-way, and crowdsourced processes for sharing health information. It also provides personalized routes to health-related public engagement and creates new ways to access health information, especially where patient experiences and medical advice is equally valued.

“These forms of organizationally 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,” 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.”