Background Social media (Facebook, Twitter LinkedIn and so on) are part of daily life for many with diverse roles ranging from entertainment, education and finance with increasing potential for sharing health information and providing support thus allowing users to create and link into networks of people with shared interests or experiences which may have an important role to play in patient centred care (Sarasohn-Kahn 2008). In contrast, outcomes in rheumatoid arthritis (RA) have too often been associated with, loss of mobility and reduced quality of life leading to loss of independence, anger, frustration and depression. Recent advances in pharmacological management have improved outcomes for many, but often add to the overall complexity of disease management for the individual.
Objectives We aimed to identify current use of social medial by people with RA and determine if this new technology could help develop a more patient-centred model of care.
Methods Semi-structured qualitative interviews were carried out with 14 people with RA to explore the lived experience of their disease, identify their current use of social media and specifically if and how they would like to see this technology used in their future care. Interviews were transcribed verbatim and a process of thematic analysis undertaken using N-Vivo software. Themes were subsequently agreed by the research team, prior to a process of respondent validation.
Results The overriding theme from respondents was one of ownership of their disease whereby social media can be used to provide a support mechanism over and above that which is already provided by visits to the multidisciplinary team. Interestingly at the point of diagnosis, respondents reported being overwhelmed by existing online resources. Therefore the desire for more patient-centred social media that could be developed specifically to be tailored by the individual was noted. These media could then be used to bring people with similar experiences who are geographically distant together in a meaningful way, for example through blogs or webinars, as well as being a source of reference for disease management and/or as a resource when attending appointments e.g. for tracking symptoms. Moreover, because of the hand pain and deformities experienced by respondents, the use of touch-screen technology (e.g. smartphones and tablets), were reported to be a much easier way of navigating health resources. Finally, the immediacy of support/information that can be provided by social media is something respondents desired.
Conclusions The type of social media that people with RA would find most useful does not yet appear to exist. These data will be used to create the architecture of an application (’app’) that people with RA and their family and friends as well as their clinicians can use to assist the monitoring and self-management of their own health.
References Sarasohn-Kahn, J. 2008. The wisdom of patients: health care meets online social media. California Healthcare Foundation. Oakland, USA. [Online]
Acknowledgements We would like to thank the National Rheumatoid Arthritis Society for assisting with recruitment and to the interview participants who gave up their time
Disclosure of Interest None Declared