Background: There is a critical need to build patient-centered multiple sclerosis (MS) research capacity in the Deep South states that have demographic characteristics affecting MS diagnosis and treatment and have large populations with below-average social determinants of health.

Proposed Solution to the Problem: This project will increase capacity for patient-centered MS research in the Deep South states.

Objectives: The project’s long-term objective is to increase patient-centered MS research, which will improve patients’ and their family members’ quality of life, in the Deep South states. The specific aims of the PCORI award include: to use training materials and strategies from a previous PCORI-funded project to develop trainings that meet the needs of patients and their family members living in Alabama and Mississippi; to train patients and their family members to effectively engage in patient-centered MS research; to develop a list of research questions that are meaningful to patients and their family members; and to create a patient-led MS research community.

Activities: This project will use resources from the PCORI Engagement Award project entitled “Engaging Patients and Their Families in Patient-Centered MS Research” that were developed and implemented in the Midwestern states by Surachat Ngorsuraches, PhD. The project will have three phases. First, the project team will conduct focus group discussions with patients and family members to review and apply the resources to develop trainings. Experts will conduct three two-day training workshops. Second, all trained patients, families, and researchers will develop research questions. Last, the patients will create a patient-centered MS research community. Alternative methods, such as virtual meetings, will be used if in-person meetings are not feasible.

Projected Outcomes and Outputs: The projected outcomes include increasing the likelihood of engaging MS patients and family members living in the Deep South states in research, which will eventually benefit them and the entire MS population. The projected outputs include: training materials that can be used to engage patients and their family members living in the Deep South states in patient-centered MS research; trained patients and family members who can effectively engage in research; patient-centered MS research questions; and a patient-led MS research community.

Patient and Stakeholder Engagement Plan: The project idea was generated by a conversation between a patient’s family member and the project lead. The Alabama-Mississippi Chapter of the National Multiple Sclerosis Society (NMSS), as a patient representative, and two clinicians, who are also researchers in MS, will be engaged throughout the project, and will meet on a monthly basis. They will monitor the engagement levels, project implementation, findings, interpretations, and dissemination of the findings. The MS patients and their family members, who are participants in the project, will also be engaged in all phases of the project. Their inputs from each step will be used to guide or adjust the subsequent steps of the project.

Project Collaborators: The Alabama-Mississippi Chapter of NMSS will be the patient partner for the project. One neurologist and one nurse, who specialize in MS at the University of Alabama, will play roles in planning, implementing, and disseminating the findings for the project.