MS-Selfie: a subscription-based online portal to assist people in the self-management of multiple sclerosis

ABSTRACT

Introduction: At the start of the COVID-19 pandemic, multiple sclerosis (MS) services had to be rapidly reconfigured due to healthcare staff being redeployed to frontline medical services. In addition, many non-urgent services, including MS services, had to be provided remotely. In response to the pandemic, many people with MS (pwMS) had little access to current, up-to-date information on COVID-19 and how to manage MS during the pandemic. In response to the unprecedented demand for information, I launched a new online question and answer portal called MS-Selfie, which has subsequently evolved into a self-management portal for pwMS. Objective(s) To present metrics of the use of MS-Selfie*, an MS self-management portal, and its evolution over the last two and half years. Aim(s) To introduce the wider MS community to the MS-Selfie self-management portal. Method(s) The MS-Selfie was originally configured to run Google sites and was transferred to Substack, a subscription-based platform, in June 2021. Substack provided online metrics. In addition, results of a user survey of 199 respondents, done between 29-11- 2021 and 31-12-2021, are presented. Result(s) As of the 18-May-2022, MS-Selfie has 6,448 email subscribers and 72,695 unique visitors to the substack site. An anonymous survey of users completed showed that 99.5% of users would recommend MS-Selfie to a friend or a colleague. 82% of respondents wanted only one or two newsletters per week. 78% wanted a podcast to accompany the newsletters, but not necessarily all of the time. 93% of respondents rated MS-Selfie as good, very good or exceptional. 92% of respondents felt there was a need for a formal MS self-management course;55% want an online course only, 44% want a hybrid course (online and face-2- face), and less than 1% want a face-2-face course only. 87% of users were satisfied with the funding model to support the MS-Selfie site. Conclusion(s) When faced with the COVID-19 pandemic, many people with MS turned to the internet for answers to their questions. Providing a real-time question and answer portal that has subsequently evolved into an MS self-management portal has identified an unmet need to educate pwMS on how to self-manage their MS.