Project Summary

Background: Care partners to those living with multiple sclerosis (MS), a chronic and progressively disabling disease, are tasked with a long-lasting and increasingly challenging role. MS care partners represent a critical resource for those living with MS, often at a cost to their own health and well-being. Care partners have substantial contributions to make to research, both as observers of the patient experience, and as people with their own needs and priorities, but the vast majority of MS research focuses solely on the patient. Comprehensive systems do not currently exist to involve MS care partners as stakeholders to engage in PCOR, and therefore this research may not reflect their priorities and needs, address the outcomes of greatest importance to them, nor take full advantage of their insights and expertise.
 
Proposed Solution to the Problem: Accelerated Cure Project, Inc. (ACP), a nonprofit located in Waltham, Massachusetts, was funded by PCORI to establish the MS People-Powered Research Network (PPRN), iConquerMS. Guided by the iConquerMS governance, whose members are, in the majority, people living with MS, and working in collaboration with other MS organizations, researchers, healthcare providers (HCPs), and funders, the iConquerMS PPRN has built a strong community of 7,200+ network participants affected by MS who are involved, through iConquerMS, in the research continuum from study concept to impact. 
To date, the primary focus of iConquerMS has been engagement with people living with MS, not their care partners. As a result, an important segment of the population impacted by MS has not been engaged through iConquerMS to develop the capacity to participate in PCOR/CER. 
With support from this Engagement Award, the project team will extend the capabilities of iConquerMS, including its engagement model and platform, to address the needs of MS care partners, to prepare them to be true partners in PCOR/CER, and through iConquerMS, provide opportunities to do so. 
 
Objectives:The primary objective is to engage MS care partners and other stakeholders interested in MS care partner-related research, as partners in PCOR/CER through full inclusion in iConquerMS. 
 
Activities: Guided by a multi-stakeholder steering committee, the team will assess the current state and existing models of care partner involvement in MS research. The team will solicit broad stakeholder perspectives as to their needs and priorities related to MS care partner research and will develop processes, policies, and modifications to iConquerMS (including its web-based portal) to enable the inclusion of MS care partners. The team will share the results of the project with other PPRNs and, more broadly, will widely distribute the tools and methods developed so they can be adapted by organizations interested in engagement of care partners as research partners. The team will evaluate stakeholder engagement throughout the project period.
 
Projected Outcomes and Outputs:
  • Formation of a multi-stakeholder steering committee to provide input and guidance throughout the project
  • Tracking of metrics that reflect the successful engagement of individuals from each stakeholder group
  • A framework describing the key considerations and approaches to engaging MS care partners and other stakeholders in MS research
  • Implementation of changes to the iConquerMS processes and portal to support engagement of MS care partners in iConquerMS 
  • Dissemination of results and materials to relevant stakeholder groups 
  • Engagement of MS care partners in the iConquerMS community
  • Engagement of funders in supporting future PCOR/CER projects in collaboration with the iConquerMS care partner community 
Patient and Stakeholder Engagement Plan: The team will partner with stakeholders interested in engagement of MS care partners in research including MS care partners, people living with MS, nonprofits, researchers and HCPs, funders, and others. Representatives from each stakeholder group will populate the steering committee that will guide the design, development, and conduct of all project activities. 
 
Project Collaborators: The multi-stakeholder steering committee will work in collaboration with the existing iConquerMS project team including IT partners Arizona State University and Ordinal Data, communications partner Ogilvy, and new project collaborators including nonprofits providing services and support to care partners.

Project Information

Sara Loud, BS, MBA, MS
Jon Strum, BA
Accelerated Cure Project for Multiple Sclerosis
$249,684

Key Dates

24 months
2021

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Last updated: November 23, 2021