Background: Multiple sclerosis (MS) results in a large and long-term impact on patients’ and their family members’ quality of life. However, information from patient-centered research has been limited. In the absence of effective patient engagement, the opportunity for this type of research will remain unfulfilled. Since patient engagement in research is the interactive, bi-directional exchange between patients and other stakeholders in the research process, all patients should receive adequate training before they are engaged in research. Since MS is the most common non-traumatic, disabling neurologic disorder of young adults and disturbs their personal autonomy, independence, dignity, and life planning, their family members must be involved in decisions patients make. Also, it is essential to start the engagement early in the process, especially agenda setting or topic selection. There is, therefore, a critical need to equip patients and their family members with the knowledge and skills necessary for engagement in patient-centered MS research and engage them in developing a patient-centered MS research agenda.
Proposed Solution to the Problem: This project will not only build a patient-centered MS research community and let them engage early in the patient-centered research process but also prepare MS patients and their family members for effective engagement. The project will take place in Midwest states, including North Dakota, South Dakota, Minnesota, Iowa, and Wisconsin.
Objectives: The long-term objective of this project is to expand patient-centered MS research. The specific aims of this project are to:
- Train patients and their family members for engaging in patient-centered MS research
- Develop a patient-centered MS research agenda
- Initiate a patient-centered MS research community
Activities: This project includes four phases, including 1) need assessment, 2) training, 3) creating a platform and developing a research agenda, and 4) finalizing the research agenda and initiating a patient-centered MS research community. The need assessment will identify training topics by using focus group discussions with patients and their family members. Three two-day educational workshops will be used for the training. The project will create a discussion platform led by patients. The patients will work with researchers and providers using this platform to develop a patient-centered MS research agenda. Finally, a patient-centered MS research community will be initiated. The community will discuss the agenda and plan further steps.
Outcomes and Outputs: The project outputs will be the cohort of patients and their family members who are capable of engaging in patient-centered MS research, the patient-centered MS research agenda, and a patient-centered MS research community. The expected outcomes will include well-equipped patients and their family members effectively engaging in more patient-centered MS research.
Patient and Stakeholder Engagement Plan: Primarily, patients with MS and their family members will be impacted most by the project. They will be engaged in planning the project, conducting the project, and disseminating the project results by taking various roles, including project participant roles and discussion-leading roles.
Project Collaborators: The Upper Midwest Chapter of the National Multiple Sclerosis Society and the School of Medicine and Public Health, University of Wisconsin will be the project collaborators.