Background: Expanding resources to everyone affected by MS requires increased diversity and inclusion. The Black MS Community voiced the need to be seen, heard, and connected to each other in a setting by and for the Black MS community. A 3-day virtual Black MS Experience Summit connected members of the Black MS community with information specific to the community, delivered by healthcare providers of color and peer to peer learning sessions
Objectives: 1) Provide a culturally responsive and authentically inclusive forum to listen and learn about the unique needs of the Black MS community; 2) Amplify the voices of the Black MS community in the MS Movement; 3) Discuss health disparities unique to the Black MS community; 4) Challenge the status quo of the National MS Societys inclusion of Black voices in program and evaluation design, implementation, and marketing.
Methods: The Black MS Experience Summit engaged participants in an interactive 2-hour daily virtual program with a presentation on Black MS research and two peer-lead breakout sessions on community focused topics. Participants were able to live-chat together and with the presenters throughout the entire event. A culturally responsive evaluation was used in the planning, implementation, and post program design providing an ongoing feedback loop between the advisory committee and staff. Post evaluation used session observation notes, chat box conversations, and a post program survey including quantitative scales and open-ended feedback.
Results: 592 individuals participated in at least one of the daily sessions. Qualitative feedback indicated the Society successfully provided a forum to build community and offer a space to share experiences, including strategies for the National MS Society to address health disparities. Following the program, 94% of respondents felt the Society had the capacity to effect positive change for the Black MS Community, 79% felt they made needed connection to information and resources, and 73% felt more connected to the Black MS Community.
Conclusions: Participants in the Black MS Experience Summit offered feedback on how the Society can continue the work of culturally responsive programming, with specific insight on the healthcare industry and access to care. Participants highlighted navigating implicit bias and the financial burden of ingrained institutional inequities. The Society will continue to listen and learn with this and other disenfranchised communities.