Incorporating community perspective in research funding: creation of the National Multiple Sclerosis Society Community Review of MS Research Committee

Abstract

Abstract Integrating community voices in scientific research is important to ensure the research outcomes reflect what is meaningful to that community. However, the process by which individuals from the community are included in scientific grant funding decisions is variable and often comprises only a patient representative on a review panel or advisory board that is largely composed of scientific experts in the field. Finding the right balance for incorporating and honoring the scientific community’s technical expertise and the patient community’s lived expertise has been a growing discussion. The work of the National Multiple Sclerosis (MS) Society is a movement by and for all people affected by MS, meaning that the perspectives of people living with MS (MS community) are essential in all work conducted by the Society. In alignment with this, the National MS Society formed the Community Review of MS Research Committee (Committee) in 2021 to gather feedback from MS community members on research grant applications. The Committee’s feedback focuses on patient-centered concerns and relevance to the MS community. The Committee is composed of a diverse group of non-scientist individuals affected by MS that provide the Society with unique MS community-specific feedback, separate from the established scientific review committee. Here the process of identifying the goals of this Committee and planning of the processes used by the committee, as well as committee implementation, execution, and refinement over three years is described. Through feedback from this Committee, it was demonstrated that people affected by MS have important perspectives and insights into research projects focused on MS and can offer unique guidance to scientist applicants. This Committee has provided benefits to the Society, the MS community, and the Committee members themselves. In addition, the formation of this Committee has allowed the Society to be better informed about topics that are relevant to the MS community and to comprehensively and systematically incorporate the MS community’s perspectives in research grant funding decisions. This publication is intended to share learnings from the development of this Committee to be useful for other disease communities with the goal of incorporating the community voice into scientific research.