Mazanderani Fadhila, O'Neill Braden, Powell John
School of Applied Social Sciences, Durham University, Durham, UK.
Patient Educ Couns. 2013 Dec;93(3):420-5. doi: 10.1016/j.pec.2013.06.006. Epub 2013 Jul 2.
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.
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.
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.
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.
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.
静脉血管成形术与慢性脑脊髓静脉功能不全（CCSVI）理论一起，被提议作为治疗多发性硬化症（MS）的一种方法。尽管对其疗效和安全性存在担忧，但仍有成千上万的患者接受了该手术。本文分析了患者分享其治疗经历的YouTube视频。
对在搜索“CCSVI”时识别出的4000多个视频中浏览量最高的100个视频进行内容分析，并对展示患者经历的热门“频道”进行定性主题分析。
视频对CCSVI采取了压倒性的积极立场；许多视频是由患者上传的，并呈现了治疗前和/或治疗后的经历。患者展示而非仅仅描述他们的症状，在治疗前后自行进行测试以量化改善情况。视频将医学术语和测试与患MS的个人经历结合在一起。
社交媒体技术为患者提供了倡导特定治疗方法的新机会；基于个人经验和医学知识的混合体生成了另类“证据”形式。
医疗从业者需要参与新的数字内容形式，包括在线社交媒体。从业者不应忽视那些不被视为“基于证据”的来源，而应加强对哪些“经验性证据”对患者具有重要意义的理解，尤其是在医疗争议领域。
