Background: The majority of multiple sclerosis (MS) research is researcher initiated. People affected by MS have questions on a variety of topics but do not have many opportunities to express and prioritize them. The lack of inclusion of the patient voice in research is even more pronounced for young people with MS, who are infrequently, if ever, asked about their research priorities, which may differ widely from those of adults living with MS. As a result, MS research may not reflect the priorities of pediatric MS patients, nor address the outcomes of greatest importance to them. Currently, there is no roadmap to guide collaborative conversations among youth with MS, researchers and funders to cocreate a multi-stakeholder research agenda and to identify those patient-centered questions of mutual interest for advancing toward funded research.
Proposed Solution to the Problem: Accelerated Cure Project (ACP), a nonprofit based in Waltham, Massachusetts, which established the iConquerMS Patient-Powered Research Network (PPRN) in 2014 with PCORI funding, will convene youth diagnosed with MS, parents, researchers and funders to collaborate on cocreating a multi-stakeholder research agenda for patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) in pediatric MS and yield a repeatable process for future collaborative efforts to advance PCOR/CER and the development of MS research agendas in other topic areas.
ACP has substantial experience in convening and facilitating multi-stakeholder engagements for achieving outcomes that reflect the alignment of diverse priorities and interests.
- Cocreate a PCOR/CER agenda reflecting the highest priority topics for youth affected by MS and aligned with the interests of researchers and funders
- Establish a repeatable process for multi-stakeholder engagement to cocreate prioritized research agendas and facilitate collaborative conversations among pediatric MS stakeholders
- Disseminate project tools and resources to enable other organizations to leverage project learnings
- Form a multi-stakeholder Steering Committee to guide the project
- Generate a landscape review of similar multi-stakeholder collaborations
- Hold two virtual multi-stakeholder convenings to cocreate a research agenda for pediatric MS and generate a repeatable process
- Develop, document and distribute tools/resources from the project
Projected Outcomes and Outputs:
Short-term outcomes during the project period include:
- A multi-stakeholder research agenda for PCOR/CER in pediatric MS
- A repeatable process for developing multi-stakeholder MS research agendas
- Resources to be used to facilitate collaborative discussions on research and in the cocreation of research agendas
Medium-term outcomes (zero to two years post project period) include greater engagement by pediatric MS patients in driving MS research and increased interest of MS stakeholders in advancing PCOR/CER in pediatric MS.
Long-term outcomes (three and more years post project period) include evidence generated by PCOR/CER in pediatric MS that addresses priority questions for pediatric MS patients to improve their health and quality of life. Interest in and funding for PCOR/CER in pediatric MS increases.
Patient and Stakeholder Engagement Plan: A diverse multi-stakeholder Pediatric Steering Committee will meet monthly to advise on all aspects of the project. Additional youth and families affected by MS, researchers and funders will participate in two virtual convenings to cocreate a multi-stakeholder research agenda for PCOR/CER in pediatric MS.
Project Collaborators: The project team will work in collaboration with Mr. Oscar Monkey, a nonprofit providing services to youth with MS, and iConquerMS’s communication partner, Ogilvy.