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Abstract Details

MS Research: Empowering Contributors and Fostering Engagement
Multiple Sclerosis
P2 - Poster Session 2 (11:45 AM-12:45 PM)
6-012
Each year, thousands of individuals contribute time, energy, resources, and personal health information to inform research, however, dissemination of findings often ceases at the clinical level. A shift in the paradigm toward collaboration and strategies that inform all contributors to the research lifecycle is essential to continuing to build bridges and empower research engagement.
People with multiple sclerosis often bear excess burden when seeking quality equitable care for managing such a complex and chronic disease. Understanding perceptions among diverse populations of people living with MS can help to inform differing stakeholder groups while also offering an opportunity to create a sense of community in a potentially isolating health issue.
The development and review of the population survey included experts in MS care and was distributed via email by the Multiple Sclerosis Association of America. Archetypal personas created with quantitative-driven insights will help to transform data into engaging materials that inform multi-stakeholder groups of the perception of barriers for people living with MS.

775 individuals shared their experiences through the 20-question survey. Respondents were between the ages of 26 and 75 years old and primarily reported being diagnosed with MS within the last three decades. 51% of respondents reported being unable to work due to their disability, with 49% reporting limited support services available, including ADA, transportation, and other community-based health resources. The highest-rated challenges for managing wellness were cost of care and treatment, employment inconsistency, and difficulty completing routine tasks.

A national patient advocacy organization in partnership with a global creative agency is distilling these outcomes into digestible and exciting content to inform advocacy, outreach, and improvement efforts. Qualitative information is being applied to humanize the self-perceived imbalance in health care quality and access into individual sample journeys quantified in natural groupings by socioeconomic characteristics including age and income level.

Authors/Disclosures
Alexis Crispino (Multiple Sclerosis Association of America)
PRESENTER
Mrs. Crispino has received personal compensation for serving as an employee of Multiple Sclerosis Association of America.
Yahaira Rivera Bobadilla No disclosure on file
Amanda Montague Amanda Montague has received personal compensation for serving as an employee of Multiple Sclerosis Association of America.