Social Media Can Help Those with Rare Illness Share Info

New research confirms that social media platforms are effective communication channels to share information about rare medical diseases.

Researchers from the University of Leicester discovered channels such as Facebook, Twitter, and other social media platforms help individuals build communities and share knowledge.

Patient experiences shared on digital platforms are also becoming a point of reference for other patients. This new information feed is sometimes in isolation of traditional medical sources, suggests research published in the journal Information, Communication, and Society.

The study examined online interactions in rare disease patient organizations.

Researchers assessed how and to what extent patient organizations use online networking structures. They specifically looked at how the network vehicles provide alternative platforms for people to discover health information and discuss disease-related issues.

The study suggests digital media:

  • eases one-way, two-way, and crowd-sourced process of health knowledge sharing;
  • provides personalized routes to health-related public engagement;
  • creates new ways to access health information, particularly where patient experiences and medical advice are both equally valued.

The research demonstrates the value of the “patient-story” and how this perspective can augment or even be more important than traditional medical channels, said Dr. Stefania Vicari.

“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,” she said.

“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.

“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.”

Source: University of Leicester