“People power” or “pester power”? YouTube as a forum for the generation of evidence and patient advocacy ^☆

Abstract

Objective

Venoplasty has been proposed, alongside the theory of chronic cerebrospinal venous insufficiency (CCSVI), as a treatment for multiple sclerosis (MS). Despite concerns about its efficacy and safety, thousands of patients have undergone the procedure. This paper analyses YouTube videos where patients have shared their treatment experiences.

Methods

Content analysis on the 100 most viewed videos from over 4000 identified in a search for ‘CCSVI’, and qualitative thematic analysis on popular ‘channels’ demonstrating patients’ experiences.

Results

Videos adopt an overwhelmingly positive stance towards CCSVI; many were uploaded by patients and present pre- and/or post-treatment experiences. Patients demonstrate rather than merely describe their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combine medical terminology and tests with personal experiences of living with MS.

Conclusion

Social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of ‘evidence’ built on a hybrid of personal experience and medical knowledge.

Practice implications

Healthcare practitioners need to engage with new digital forms of content, including online social media. Instead of disregarding sources not considered ‘evidence-based’, practitioners should enhance their understanding of what ‘experiential-evidence’ is deemed significant to patients, particularly in contested areas of healthcare.