The MS Minority Research Engagement Partnership Network

Background: Multiple sclerosis (MS) affects people of many races and ethnicities, and may have an especially heavy impact on minority populations. Research is essential to advance the understanding of MS in different populations. However, participation in research is known to be lower in minority groups. The lack of diversity in research participation limits application of results to the entire MS population, and lack of engagement in research prevents issues of concern to minority groups from being addressed.

Proposed Solution: The project team proposes creating a national partnership network dedicated to increasing minority engagement in MS patient-centered outcomes research (PCOR) and comparative effectiveness research (CER). This partnership will include people with MS belonging to minority groups, health and advocacy organizations, biopharma companies, researchers, and community leaders. The network will work closely together, pooling knowledge and resources and reaching out to other stakeholders to accomplish its objectives.

Objectives: The first aim will be to document the barriers that prevent engagement of minorities in MS research. The project team will then implement strategies to overcome these barriers, both by enabling organizations and community leaders to learn more about MS and the importance of participatory research, and through direct outreach to minority communities. The team’s long-term objective is to improve MS research through greater inclusion of all communities in research, and to benefit minority communities through greater engagement in research. The team will also share its knowledge and materials with groups working to increase minority research engagement in other diseases.

Activities:

1. Form the network and identify information and expertise that members can contribute to the effort. Document barriers to research engagement in MS.
2. Develop an MS research engagement toolkit to equip network members and other groups with communication templates and information.
3. Conduct outreach to minority groups, via methods such as engagement with black and Hispanic churches, regional meetings, and social media campaigns.

Intended Outcomes:

1. Establishment of the partnership with representatives from each stakeholder group
2. A report on barriers affecting minority engagement in MS research and needs to be addressed
3. Outreach materials and messages that will be disseminated through a variety of channels
4. Metrics regarding the effectiveness of the team’s methods
5. Dissemination of the project’s results and materials to relevant stakeholder groups

Patient and Stakeholder Engagement Plan: The partnership network will include people with MS belonging to minority groups, minority health organizations, MS advocacy organizations, MS biopharmaceutical companies, MS investigators, and community leaders. Partners will be engaged in each network activity throughout the project. People with MS in minority groups who are not part of the partnership will be engaged throughout the project through surveys and targeted outreach efforts. Other stakeholders, including minority investigators and churches, will be engaged starting in Q2 of the project.

Project Collaborators: Accelerated Cure Project is the lead organization for this project. Feinstein Kean Healthcare is the strategic minority health and communications partner. The National MS Society, the MS Association of America, and Biogen have provided input to this proposal, as have patient stakeholders, and they and others will be invited to join the partnership.