Objective: To assess engagement in research advocacy among Black and African people with Parkinson’s and their care partners.

Background: Black and African American people with Parkinson’s disease (PD) face significant disparities in care, including delays in diagnosis and treatment, limited access to care, and historical exclusion from research. To address these challenges, the Parkinson’s Foundation Research Advocacy Training program, the Learning Institute, was tailored to engage, educate, and empower the Black community in Parkinson’s research.

Method: The Learning Institute trained people living with PD from the Black community and their care partners in research and patient engagement, providing opportunities for research advocates to partner with researchers developing new treatments and for community advocacy. Pre/post measures assessed readiness for advocacy. Ongoing engagement was tracked for 6 months to assess sustainability.

Results: The Learning Institute was held in September 2023. 33 people from the Black community were trained in research advocacy (16 people with Parkinson’s, 17 care partners; Average age=58 years; Average years of diagnosis=8 years). Community awareness and education was rated as the most interesting area for research advocacy (54%), followed by Collaborations with Industry (25%). 79% of Research Advocates indicated feeling prepared to begin research advocacy and 83% indicated feeling excited about the work they can do as a Research Advocate. To date, 17 meetings on continued education and engagement were held by the Parkinson’s Foundation patient engagement team and all research advocates have been engaged in at least one meeting. 17 advocacy tasks were completed by 26 Research Advocates. Of those tasks, 16 were community engagements (e.g. presentation at local churches and health fairs, panelists at a Parkinson’s Foundation community-based program), and one was a partnership with a professional coalition to inform Parkinson’s care.

Conclusion: The Learning Institute effectively empowered African Americans living with PD to become advocates for community outreach and engagement. With collaboration, education, and partnerships, this program has the potential to drive meaningful change, enhance equity, and improve outcomes for individuals living with PD in the Black and African American community.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/engage-educate-and-empower-parkinsons-research-advocates-from-the-black-and-african-american-community/