How Patients With Rare Diseases Use Social Media for Health
Author: University of Leicester
Published: 2016/03/24 - Updated: 2026/02/14
Publication Type: Instructive / Helpful
Category Topic: Medical Research - Related Publications
Page Content: Synopsis - Introduction - Main - Insights, Updates
Synopsis: This research study published in the journal Information, Communication and Society, conducted by Dr. Stefania Vicari at the University of Leicester and supported by the Wellcome Trust. The study examined how rare disease patient organizations use platforms like Twitter and Facebook to share experiential health knowledge and build supportive communities. Its findings show that social media enables one-way, two-way, and crowdsourced health knowledge sharing, and that patient experiences posted online are increasingly used as reference points by other patients - sometimes independently of traditional medical sources. This is particularly relevant for people with rare diseases and disabilities, where formal medical knowledge may be limited and geographic isolation can make peer connection difficult. The scholarly nature of the work and its backing by a major research funder give its conclusions real weight for anyone interested in how digital communication is reshaping patient advocacy and health information access - Disabled World (DW).
Introduction
Social Media: Study of Patient Experience Sharing
University of Leicester research suggests patients often seek medical knowledge from social media platforms rather than traditional medical sources. 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 published in the journal Information, Communication and Society suggests.
Main Content
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 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."
The study 'Health Activism and the Logic of Connective Action. A Case Study of Rare Disease Patient Organisations', supported by the Wellcome Trust and published in the journal Information, Communication and Society.
Insights, Analysis, and Developments
Editorial Note: What this study captures is something that many patients with rare conditions already know from personal experience - that when the medical establishment has limited answers, other patients often become the most valuable source of practical information. Social media has made that exchange faster and far more accessible than it has ever been. For someone newly diagnosed with a rare disease, finding a community of people who understand the condition firsthand can be as important as finding the right specialist. Dr. Vicari's research puts academic structure around this reality and raises a point worth paying attention to: patient-generated knowledge is not just emotional support, it has the potential to genuinely supplement clinical understanding, particularly in areas where research data is thin. As healthcare systems continue to grapple with how to serve patients whose conditions are poorly understood, the role of online patient communities is only going to grow more significant - Disabled World (DW).Attribution/Source(s): This quality-reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally authored by University of Leicester and published on 2016/03/24, this content may have been edited for style, clarity, or brevity.