Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Participatory Medicine

When faced with a diagnosis of multiple sclerosis (MS), patients often turn to the Internet and social media to find support groups, read about the experiences of other people affected by MS and seek their advice, and research their condition and treatment options to discuss with their healthcare professionals (HCPs). Here, we examine the use of social media and the Internet among patients with MS, considering its impact on patient empowerment and patient participation in treatment decision-making and MS research. These themes are exemplified with first-hand experiences of the patient author. We also explore the impact of the Internet and social media on the management of patients from the perspective of HCPs, including new opportunities for HCPs to engage in participatory medicine and to improve communication with and among patients. We consider both the benefits afforded to and the potential pitfalls faced by HCPs when interacting with their patients via these routes, and discuss potential concerns around privacy and confidentiality in the use of the Internet and social media in the clinical context. Communication online is driving the evolution of the patient–HCP relationship, and is empowering patients to participate more actively in the decision-making process relating to the provision of their health care.