2021 CMSC Annual Meeting

National MS Society Facebook Community Offers Connection and Virtual Education Options for People Affected By MS


Background: COVID-19 required the transition from in-person programming to virtual options. Understanding the importance of peer-to-peer support, access to on-demand information, and a safe space to connect, the Society Facebook Community was launched and became a hub of virtual connectivity. The Facebook Community provided a forum for people affected by MS to participant in self-paced learning units in a virtual social setting where members could freely share and offer support. This format helped people meet the everyday challenges that MS imposes on through authentic connections to support and information. Objectives: 1) Provide self-paced learning units in a social setting 2) Create a community where members can connect for advice and support. Community members objectives, 1) Develop organic and genuine community to share knowledge, experience, and information, 2) Have a safe space where members give and receive the support they need, when they need it. Methods: The Facebook Community provided on-demand support and access to learning units. Individuals interested in joining were vetted by Society staff with questions about relationship to MS, length of diagnosis, and goals of joining the Community. Three Learning Units were available for on-demand access on health and wellness, COVID-19, and access Ask an MS Expert recorded sessions. The evaluation of the program focused on understanding to goals and needs of the MS Community in the virtual space as well as key outputs including age, geographic location, length of diagnosis, and total membership and active membership as identified by Facebook’s algorithm. Results: At the close of the fiscal year, September 30, 2020, the Community had 3,000 members, with 1,600 being labeled as active by Facebook. 84% of participants were living with MS, with a range of diagnosis length from less than 1 year (N=20%) to over 11 years (N=25%), 81% of the group identified as Female, and 19% as Male. The top 5 countries by membership were the United States, United Kingdom, Australia, Canada, and India. The Society’s stated goal was to provide ongoing learning units and evaluate their effectiveness, while this matched some aspects of the community’s stated goal, it did diverge in practice with the primary need expressed and acted on being the need to connect and share with each other. The Facebook Community was successful in achieving the community goal of organic and genuine on-demand support. Conclusions: This Community experienced rapid growth during the peak of the COVID-19 pandemic in 2020 and provided a safe space for members to share and connect with each other. As the world continues to evolve, we will adapt to meet the needs of all people living with MS and remove barriers preventing access to information, connections, and people. We will use this pilot and our other virtual programs to provide timely and relevant information and on-demand educational opportunities regardless of location.