Targeted Approaches for Minority Engagement in Multiple Sclerosis Research (TAME MS)

Research Objectives: To identify current barriers to participation in clinical trials among Black adults with multiple sclerosis (MS). To identify strategies to increase engagement in this group.

Design: Qualitative phenomenological design, including four phases: literature review, expert panel- researchers in health disparities, expert panel- community leaders, and semi-structured interviews with previous research participants.

Setting: Academic medical center

Participants: Five health disparities investigators (60% female, 20% Black), five community leaders (80% female, 100% Black), 10 previous research participants (90% female, 100% Black).

Interventions: NA

Main Outcome Measures: 1. Barriers to clinical trial participation. 2. Strategies for engagement in trials.

Results: Literature review resulted in four themes: 1. External barriers (e.g., lack of transportation), 2. Internal barriers (e.g., lack of awareness about trials), 3. Safety and trust in the scientific community, 4. The role of physicians (e.g., overcoming biases to referring Black patients to trials). Health disparities experts reinforced themes of external barriers and trust, and offered successful strategies from obesity and diabetes trials. Strategies included providing flexibility in scheduling, hiring a diverse study team, and utilizing cultural institutions to increase awareness of trial activities. Community leaders expanded on this, suggesting collaborations with churches, professional organizations, and fraternities/sororities. Finally, previous trial participants with MS indicated that awareness and trust are imperative for enrollment. Specifically, physicians and family members were viewed as trusted sources for information, while recruitment via social media, radio, or television were considered untrustworthy. Community leaders and previous participants stressed the need to increase awareness of MS among primary care providers as well as the Black community.

Conclusions: Increasing clinical trial participation will require direct encouragement from healthcare providers, however there is a need to improve primary care providers' awareness of MS prevalence in Blacks. Black adults may distrust scientific research. Increasing the transparency of study goals and processes, and recruiting through trusted organizations may help overcome this challenge. Cultural institutions including churches and social organizations are pillars of many Black communities and may be important recruitment sources for Black participants with MS.

Author(s) Disclosures: None