Is social media the answer to the support desired by people with RA? A qualitative exploration

Background: Social media (Facebook, Twitter LinkedIn and so on) are part ofdaily life for many with diverse roles ranging from entertainment, education andfinance with increasing potential for sharing health information and providingsupport thus allowing users to create and link into networks of people withshared interests or experiences which may have an important role to playin patient centred care (Sarasohn-Kahn 2008). In contrast, outcomes inrheumatoid arthritis (RA) have too often been associated with, loss of mobilityand reduced quality of life leading to loss of independence, anger, frustrationand depression. Recent advances in pharmacological management haveimproved outcomes for many, but often add to the overall complexity of diseasemanagement for the individual.Objectives: We aimed to identify current use of social medial by people withRA and determine if this new technology could help develop a more patientcentredmodel of care.Methods: Semi-structured qualitative interviews were carried out with14 people with RA to explore the lived experience of their disease, identifytheir current use of social media and specifically if and how they would liketo see this technology used in their future care. Interviews were transcribedverbatim and a process of thematic analysis undertaken using N-Vivo software.Themes were subsequently agreed by the research team, prior to a process ofrespondent validation.Results: The overriding theme from respondents was one of ownershipof their disease whereby social media can be used to provide a supportmechanism over and above that which is already provided by visits to the multidisciplinary team. Interestingly at the point of diagnosis, respondentsreported being overwhelmed by existing online resources. Therefore the desirefor more patient-centred social media that could be developed specifically tobe tailored by the individual was noted. These media could then be used tobring people with similar experiences who are geographically distant togetherin a meaningful way, for example through blogs or webinars, as well as beinga source of reference for disease management and/or as a resource whenattending appointments e.g. for tracking symptoms. Moreover, because ofthe hand pain and deformities experienced by respondents, the use of touchscreentechnology (e.g. smartphones and tablets), were reported to be a mucheasier way of navigating health resources. Finally, the immediacy of support/information that can be provided by social media is something respondentsdesired.Conclusions: The type of social media that people with RA would find mostuseful does not yet appear to exist. These data will be used to create thearchitecture of an application (‘app’) that people with RA and their family andfriends as well as their clinicians can use to assist the monitoring and selfmanagementof their own health.