Redesign the Parkinson’s Foundation Learning Institute for the Black community living with Parkinson’s

Black people living with Parkinson’s are underrepresented in research and the full impact of Parkinson’s on the Black community is unknown. There are limited programs that address diversity in Parkinson’s research. The Parkinson’s Foundation Learning Institute has the potential to mitigate health inequities through targeted and tailored training in research advocacy.

The Learning Institute trains people with Parkinson’s and care partners to collaborate with researchers/scientists as primary partners in the drug development process. Guided by best practices in patient engagement, the Parkinson’s Foundation formed a partnership with the Black Parkinson’s community (people with Parkinson’s, care partners, Morehouse School of Medicine, neurologists, and other health professionals) to redesign and execute The Learning Institute using culturally responsive pedagogy. PD GENEration, a national initiative to offer free genetic testing and counseling to the Parkinson’s community, was embedded in the curriculum as research that aims to improve enrollment of the Black community.

The Learning Institute was held in September 2023. Thirty-three (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). 71% reported having never participated in a clinical trial. Pre/Post measures demonstrated improvements in knowledge and attitudes towards research. Atteendees reported being most interested in community advocacy (i.e., personal stories to raise awareness). After an educational, question-answer session and a live demonstration, several attendees enrolled in PD GENEration.

Attendees returned to their community as research advocates, positioned to collaborate with researchers/scientists to advance treatment and use their voice in the community to educate, raise awareness about Parkinson’s and the benefits of research,  a step towards advancing health equity for the Black Parkinson’s community.