Background: Children and teens diagnosed with multiple sclerosis (MS) and their families face a great deal of uncertainty resulting from the diagnosis of a chronic and unpredictable disease. As MS is more commonly seen in adults, and because research with children requires additional steps to ensure their care and protection, the vast majority of MS research focuses solely on adults. There is a lack of information available as to the long-term impact of pediatric MS on overall health, quality of life, emotional impact, and family systems. While systems do exist to include children living with MS as subjects in research, there are no systems to involve them as stakeholders and partners in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER). Therefore, the research currently being conducted in pediatric MS may not reflect their priorities and needs, nor address the outcomes of greatest importance to them.
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 6,800+ network participants affected by MS, who are involved, through iConquerMS, in the research continuum from study concept to impact.
To date, only adults, 21 years of age and older, have been eligible to participate in iConquerMS as the initiative does not currently include the necessary operational, regulatory, and ethical considerations to engage with children and teens. 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 pediatric patients and families, 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 pediatric MS patients, their families, and other stakeholders 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 of pediatric MS research, the existing models of pediatric research, and the ethical and regulatory requirements of engaging a pediatric population in research, and will solicit broad stakeholder perspectives as to their needs and priorities related to pediatric MS research. The team will develop processes, policies, and modifications for iConquerMS (including its web-based portal) to enable the inclusion of children and teens with MS and their families in iConquerMS. The team will share the results of the project with other PPRNs and will widely distribute the new tools and methods developed so they can be adapted by organizations interested in engagement of pediatric populations and associated stakeholders as research partners. The team will evaluate the impact of the capacity building process and other 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 such as landscape review of the current state of pediatric MS research and a synthesis of stakeholder perspectives that reflect the successful engagement of individuals from each stakeholder group.
An engagement and operations framework describing the key considerations and approaches to engaging pediatric MS patients and other stakeholders as partners in MS research.
Implementation of changes to the iConquerMS processes and portal to support engagement of pediatric participants in iConquerMS.
Dissemination of results, such as a shareable pediatric MS research toolkit, to relevant stakeholder groups.
Engagement of pediatric patients and their family members in the iConquerMS community.
An evaluation plan for stakeholder engagement and project impact, including metrics and lessons learned to be shared broadly.
A sustainability plan documenting key revenue sources and activities to be undertaken to ensure sustained operations of the capabilities achieved under this Engagement Award.
Engagement of funders in supporting future PCOR/CER projects in collaboration with the iConquerMS pediatric community.
Patient and Stakeholder Engagement Plan: The project team will partner with stakeholders interested in engagement of children and teens living with MS in research throughout the project including pediatric MS patients, their care partners and families, nonprofits, researchers and HCPs working in pediatric MS, 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 the nonprofits Mr. Oscar Monkey and the Pediatric MS Alliance.
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Engaging the Pediatric Community in MS Research
Sara Loud, Chief Executive Officer at the Accelerated Cure Project for Multiple Sclerosis (MS), shares how iConquerMS is using a PCORI-funded Engagement Award to help build capacity to engage the pediatric MS community in healthcare research.