Background: The Accelerated Cure Project established iConquerMS and the Multiple Sclerosis Patient-Powered Research Network (MS-PPRN) in 2014. iConquerMS has built a community engaged in a variety of research activities, with over 300 research questions submitted by members. However, the organization has not yet established a process for advancing these topics into studies that impact the quality of life of people affected by MS.
Proposed Solution to the Problem: iConquerMS will develop a system for enabling patient-driven research (PDR). The system will engage people affected by MS, researchers, and funders, and will support the collection, prioritization, and advancement to funded studies of research topics suggested by people with MS.
Develop a robust and repeatable PDR process that supports the generation and prioritization of research topics that are of interest to people affected by MS
Strengthen methods for sharing the results of research studies with members, and for sharing tools and best practices with PCORI-funded investigators and initiatives and the wider research community
Activities: The project will:
Form a steering committee to guide the project
Conduct an inventory of existing PDR methods and survey stakeholders to learn about their preferences
Design and implement a PDR process that meets the needs of stakeholders
Generate educational materials needed to support the PDR process
Evaluate the efficiency, effectiveness, and impact of the PDR process
Outcomes: The project team’s output will be a PDR process that supports the advancement of member-generated research topics into research. The team aims to use this process to advance one high-priority topic to the point of identifying investigators and funders interested in conducting a study on the topic. The team will also produce a landscape review of available PDR tools and resources; a collection of resources to educate different stakeholder types about PDR; and a toolkit to be shared with peer PPRNs and other organizations seeking to conduct PDR.
Patient and Stakeholder Engagement: The project team will form a steering committee that includes six people with MS, one support partner, two researchers, one funder, and one healthcare provider. This group will help to drive all elements of the project. The iConquerMS community will be engaged throughout the project and invited to:
Provide their opinions about PDR via surveys
Participate in the review of the enhanced portal
Contribute to PDR through submitting topics, commenting and voting on submitted topics, and selecting topics to advance to the planning and funding stages
Promote PDR activities through blog postings, social media content, podcasts, etc.
Project Collaborators: iConquerMS governance, member community, project team, researchers, the National MS Society, Arizona State University, and Ordinal Data, Inc.
The COVID-19 pandemic presents many challenges to those living with chronic conditions like multiple sclerosis (MS) and racial and ethnic minority populations are disproportionately affected.
This project will leverage existing engagement infrastructure, personnel, and stakeholder partnerships to support the development of a COVID-19-related, patient-driven MS research agenda and process to prioritize and disseminate those research ideas. The project has a special focus on reaching underrepresented communities. iConquerMS has launched the COVID-19 in MS Study, which will collect data from MS patients and caregivers on COVID-19 status and testing, and the impact on their health care and quality of life.