YouTube and Patient Activism: Online Video and the Generation of ‘Experiential’ Evidence
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Abstract
Background: Started in 2005, YouTube is a popular video sharing platform. There are numerous health-related videos on YouTube, many of which have been created by individuals affected by different conditions. These videos are often extremely compelling, containing detailed information about people’s personal experiences and opinions. Considerable concern has been expressed about the consequences of inaccurate or dangerous information disseminated through online videos. At the same time, online video is seen as a promising medium for health promotion.
Objective: The aim of this paper is to examine how ‘evidence’ is generated in and through YouTube in order to enhance our understanding of the consequences of user-generated videos in contemporary healthcare. We combine a discussion of the extant literature on health-related YouTube videos with an in-depth analysis of YouTube videos in relation to a controversial theory and associated endovascular intervention for Multiple Sclerosis (MS) – chronic cerebrospinal venous insufficiency (CCSVI).
Methods: From over 4,000 videos returned from a YouTube search for ‘CCSVI’, we analysed the top 100 most popular. We adopted a mixed-methods approach. First, a quantitative analysis assessed the content of each video, using a coding scheme developed through discussion amongst the authors. The videos were coded independently by two authors in relation to how they portrayed CCSVI. Second, a qualitative thematic analysis was carried out on user ‘channels’ that contained pre- and post-intervention experiences.
Results: The videos adopted an overwhelmingly positive stance towards CCSVI (96%). The number of views of the top 100 videos ranged from 7,103 to 79,956. This is comparable with the number of views of the top 100 videos relating to other MS treatments such as ‘low-dose naltrexone’ (1,332 to 131,141) and Tysabri/natalizumab (3,911 to 72,595). Many were uploaded by patients (66%) and presented pre- and/or post- treatment experiences. Patients demonstrated rather than merely described their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combined medical terminology and tests with personal experiences of living with MS. The video creators frequently engaged in discussion with their ‘viewers’ through the commenting facilities provided by YouTube and their videos often contained links to other sources of information, such as websites or Facebook pages.
Conclusion: YouTube provides patients with novel opportunities for sharing information about their experiences of different treatments, generating alternative forms of ‘experiential evidence’ built on a hybrid of personal experience and medical knowledge that is embedded within wider social networking platforms and online communities. While situated in relation to what might be considered more ‘mainstream’ medical evidence, ‘experiential evidence’ privileges the alleviation of symptoms that are not always easy to measure using traditional metrics and are presented not in abstract, but in the ‘everyday’ life of particular individuals. Furthermore, social media platforms enable the aggregation of individual experiences, creating a database of experiences that patients can search and draw on in making their own healthcare decisions. Instead of disregarding sources not considered ‘evidence-based’, healthcare practitioners should enhance their understanding of what evidence is deemed significant to patients, particularly in contested areas of healthcare.
Objective: The aim of this paper is to examine how ‘evidence’ is generated in and through YouTube in order to enhance our understanding of the consequences of user-generated videos in contemporary healthcare. We combine a discussion of the extant literature on health-related YouTube videos with an in-depth analysis of YouTube videos in relation to a controversial theory and associated endovascular intervention for Multiple Sclerosis (MS) – chronic cerebrospinal venous insufficiency (CCSVI).
Methods: From over 4,000 videos returned from a YouTube search for ‘CCSVI’, we analysed the top 100 most popular. We adopted a mixed-methods approach. First, a quantitative analysis assessed the content of each video, using a coding scheme developed through discussion amongst the authors. The videos were coded independently by two authors in relation to how they portrayed CCSVI. Second, a qualitative thematic analysis was carried out on user ‘channels’ that contained pre- and post-intervention experiences.
Results: The videos adopted an overwhelmingly positive stance towards CCSVI (96%). The number of views of the top 100 videos ranged from 7,103 to 79,956. This is comparable with the number of views of the top 100 videos relating to other MS treatments such as ‘low-dose naltrexone’ (1,332 to 131,141) and Tysabri/natalizumab (3,911 to 72,595). Many were uploaded by patients (66%) and presented pre- and/or post- treatment experiences. Patients demonstrated rather than merely described their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combined medical terminology and tests with personal experiences of living with MS. The video creators frequently engaged in discussion with their ‘viewers’ through the commenting facilities provided by YouTube and their videos often contained links to other sources of information, such as websites or Facebook pages.
Conclusion: YouTube provides patients with novel opportunities for sharing information about their experiences of different treatments, generating alternative forms of ‘experiential evidence’ built on a hybrid of personal experience and medical knowledge that is embedded within wider social networking platforms and online communities. While situated in relation to what might be considered more ‘mainstream’ medical evidence, ‘experiential evidence’ privileges the alleviation of symptoms that are not always easy to measure using traditional metrics and are presented not in abstract, but in the ‘everyday’ life of particular individuals. Furthermore, social media platforms enable the aggregation of individual experiences, creating a database of experiences that patients can search and draw on in making their own healthcare decisions. Instead of disregarding sources not considered ‘evidence-based’, healthcare practitioners should enhance their understanding of what evidence is deemed significant to patients, particularly in contested areas of healthcare.
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