Harnessing the power of social media: how can it help in axial spondyloarthritis research?

Abstract

Axial spondyloarthritis (axSpA) is a chronic inflammatory rheumatic disease that is relatively unknown among the general public. Most patients with axSpA are young or middle-aged adults and more likely to use some social media. This review highlights trends in the application of social media and different ways in which these tools do already or may benefit clinical research, delivery of care, and education in rheumatology, particularly in the field of axSpA. This article discusses four areas in the biomedical field that social media has infused with novel ideas: (i) the use of patient-generated health data from social media to learn about their disease experience, (ii) delivering health education and interventions, (iii) recruiting study participants, and (iv) reform, transfer, and disseminate medical education. We conclude with promising studies in rheumatology that have incorporated social media and suggestions for future directions. Rheumatologists now have the opportunity to use social media and innovate on many aspects of their practice. We propose further exploration of multiple ways in which social media might help with the identification, diagnosis, education, and research study enrollment of axSpA patients. However, standardization in study design, reporting, and managing ethical and regulatory aspects will be required to take full advantage of this opportunity.