ArticlePatient education and counseling2013
"People power" or "pester power"? YouTube as a forum for the generation of evidence and patient advocacy.
Article in Patient education and counseling, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
26 citing papers in PubMed.
- Using Social Media Listening to Understand the Pressure Injury Experience: A Qualitative Descriptive Study.JMIR nursing · 2026Article
- Contemporary visualities of ill health: On the social (media) construction of disease regimes.Sociology of health & illness · 2025Article
- Content, educational value and quality analysis of videos about neurorehabilitation in people with multiple sclerosis on YouTube®.Revista de neurologia · 2024Article
- Online video resources pertaining to cerebral palsy: A YouTube-based quality control study.Journal of children's orthopaedics · 2024Article
- Critical appraisal of evidence supporting prescription of psychedelics from clinic websites in Ontario, Canada.PloS one · 2024Article
- YouTube Videos Are a Moderately Comprehensive, Reliable, and Quality Option to Learn About "Multiple Sclerosis and Sexuality".International journal of sexual health : official journal of the World Association for Sexual Health · 2024Article
- Evaluating the Supporting Evidence of Medical Cannabis Claims Made on Clinic Websites: Cross-Sectional Study.Journal of medical Internet research · 2023Article
- "Sharing Is Caring:" Australian Self-Trackers' Concepts and Practices of Personal Data Sharing and Privacy.Frontiers in digital health · 2021Article
- A Facilitated Web-Based Self-Management Tool for People With Type 1 Diabetes Using an Insulin Pump: Intervention Development Using the Behavior Change Wheel and Theoretical Domains Framework.Journal of medical Internet research · 2020Article
- Social Media Strategies for Health Promotion by Nonprofit Organizations: Multiple Case Study Design.Journal of medical Internet research · 2020Article
- Supporting Good Intentions With Good Evidence: How to Increase the Benefits of Diabetes Social Media.Journal of diabetes science and technology · 2019Article
- Bipolar patients and creative online practices: Sharing experiences of controversial treatments.Health (London, England : 1997) · 2019Review
- Neurology and the Internet: a review.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2018Review
- Reflections on translation: Views of participants in a multisite Canadian CCSVI clinical trial.Neurology. Clinical practice · 2018Review
- Resilience, trust, and civic engagement in the post-CCSVI era.BMC health services research · 2018Article
- Views of Community Managers on Knowledge Co-creation in Online Communities for People With Disabilities: Qualitative Study.Journal of medical Internet research · 2017Article
- Caught in a no-win situation: discussions about CCSVI between persons with multiple sclerosis and their neurologists - a qualitative study.BMC neurology · 2017Article
- Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum.Journal of medical Internet research · 2015Article
- YouTube Videos Related to Skin Cancer: A Missed Opportunity for Cancer Prevention and Control.JMIR cancer · 2015Article
- Bad News: Analysis of the Quality of Information on Influenza Prevention Returned by Google in English and Italian.Frontiers in immunology · 2015Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
objectiveVenoplasty 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.
methodsContent 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.
resultsVideos 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.
conclusionSocial 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.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.