Social media platforms such as YouTube and Facebook enable the aggregation of individual experiences, creating a database of experiences that patients can draw on. Moreover, the sharing of personal experiences online can be used to advocate for policy changes and to prioritize particular research agendas. The increasingly mainstream adoption of social media technologies means that this type of ‘people power’ advocacy will likely proliferate and be adopted by other groups looking to disseminate their message [14]. In the case of CCSVI this has led check details to some patients expressing

extreme frustration at the slow speed of research and policy change, while many in the medical establishment have expressed an equal frustration about what they perceive as a hijacking of the MS research agenda – seeing online patient activism as ‘pester’ rather than people power [16]. The sharing of health experiences on YouTube is part of a general rise in the sharing of experiences on social networking and other sites that is relevant for health professionals. Rather than simply expressing

concern about the use of social media in relation to contested and/or alternative treatments it has become important for practitioners and researchers to engage with this content. In many cases, interested patients will seek out information about new and controversial treatments regardless of what they are told in clinical consultations. Instead of dismissing information they do not consider ‘evidence-based’, healthcare Metformin ic50 practitioners need to enhance their understanding of the forms of evidence, especially experiential evidence, considered significant to patients. Previous research has highlighted a gap between what MS patients and clinicians rate as important to them [44]; we noted a similar gap between CCSVI research and patient videos. Whereas much CCSVI research focuses on ascertaining the relationship between venous insufficiency and multiple sclerosis at a physiological level, patients, as demonstrated in these videos, are concerned with whether the ‘liberation’ procedure

improves their symptoms. Videos contained discussions about Rutecarpine aetiology, but this was secondary to the description and demonstration of symptomatic improvement as a way to ‘prove’ the effectiveness of the treatment. By gaining a better understanding of the experiences and priorities of different patients presented in social media, healthcare practitioners may be better able to focus on issues of importance to patients and avoid the polarization that has taken place in the case of CCSVI. The research presented in this paper was funded by the National Institute for Health Research (NIHR) in the UK as part of the iPEX programme. The iPEx programme presents independent research commissioned by the NIHR under its Programme Grants for Applied Research funding scheme (RP-PG-0608-10147).