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Social Media and OPEx: The case of YouTube<br />Online Patient Experience (PEx) and its role in e-health<br />25th BCS conference on Human-Computer Interaction 2011<br />Michael Hardey<br />email@example.com<br />(<br />
In 2006, YouTube - Time magazine’s invention of the year, and the ‘person’ of the year issue cover was a mirrored computer monitor to suggest that ‘You’ were the person of the year because of YouTube. <br />112.8 million unique U.S. viewers alone in January 2011. <br />Nearly 2 million viewers have seen a video about eczema and another concerned with diabetes has an audience of over 1.5 million. <br />http://www.youtube.com/watch?v=M_joEfXEiME<br />
Methods<br />Search terms eczemaand my eczema. <br />6,590 results. <br />YouTube provides up to 1,000 video clips per search. <br />By default search outcomes are sorted by relevance. <br />First 260 corresponded best to the search term.<br />105 videos - the first 10 that were presented as ‘most relevant’ – created by 5 men and 5 women.<br />Attached to these 800 comments.<br />
In all but one video the authors videos looked at the camera directly at the viewer for most of the time. In most cases the camera closely framed the authors, displaying mainly their faces and shoulders. In three videos close-ups of the signs of eczema of the skin were displayed.<br />There is an interplay between authors and their audience that is acted out through the comments associated with specific YouTube videos. <br />In effect the videos act as prompt or platform for audience participation. <br />Methods - Video content<br />
Analysis of the comments - 4 interconnected themes<br />Allergies and diet <br />Medical treatment<br />Complementary and Alterative Medicine <br />Self-esteem <br />The following extracts are for <br />Illustration and have been <br />anonymised in this version of the presentation<br />
Allergies and diet <br />Thanks so much for your vid. You skin looks great now but it was as bad as mine in your first vid. You are right it is so difficult but there is no choice but to be strict about what you eat. …. My GP told me I had should be careful but he also gave me creams that I hated and did no good so what does he know!!!! <br />
Medical Treatment<br />I'm curious I don't have medical insurance in order to visit a dermatologist. I'm an African American with a light brown complexion I’ve had these light spots ….makes it look like I’m two toned. I see you have some of this do you know the name of what be wrong with my back what do you recommend?.... Any help/advice will be greatly appreciated. <br />Nice vid looks like eczema to me. Frist thing is try out my diet <br />
Complementary and Alterative Medicine (CAM)<br />Thank you thank you thank youuuuu for your videos. <br />I just want to thank you because if I went to the doctor and kept taking those prescription medicines, my eczema probably would of got worse. I'm back to my normal skin tone and everything ….. your video and Rosemary. We made it and finally won so now I can say to the doctors Haha! All natural baby! Lol.<br /> <br />If you watched my other vids, I mentioned putting steroids on my face for years. It eventually started to turn the whites my eyes yellow. <br />
Self esteem<br />I just wanted to say a huge thank you for your videos. This might sound dumb but I actually got kinda emotional watching your videos since I feel eczema is such a personal issue for me. I feel so embarrassed about mydry, red and blotchy face. You’re so confident in yourself and what you've been saying has really motivated me. <br />I’m scared to have sex because of what my boyfriend may say<br />
Conclusion<br />Social media users not just Generation Y.<br />Social media patient created information is shaping health behaviour.<br />We need to recognise that how it is created and used is ways that are different from established work on online forums and other Web 1.0 spaces.<br />We need to understand how organisations and state agencies use social media.<br />We need to revisit debates about the risk and impact.<br />We need to devise new or adapt old methodologies and theories to researching and understanding social media information and relationships.<br />
The ‘patientfication’ of information? <br />For those connected through networks patientfication is characterised by:<br />Visual, audio and text information<br />Anchored in networked authorship(s) - subscribers ‘follow’…. <br />Always emergent - consuming and remixing information from multiple sources - engages many authors<br />
Final thoughts …<br />For Lash “informational knowledge” figures as disembedded, de-contextualized, and partly meaningless leading to a “desinformierteInformationsgesellschaft(disinformed information society)” and a “out-of-control anarchy of information diffusion” (2002:76, 124 emphasis in original).<br />Following Lash, Nettleton and Burrows suggest a “reflexive engagement with information” (2003: 181).<br />Under ‘patientfication’ suggested here, information is contextualised, chosen (or controlled) and subject to networked consumption and creation.<br />
References<br />Nettleton, S. and R. Burrows (2003) “E-Scaped Medicine? Information, Reflexivity and Health”, Critical Social Policy 23(2): 165-185.<br />Lash, S. (2002) Critique of Information. London: Sage.<br />