Lessons Learned from a Parkinson’s Research Patient Advisory Board Model with Academic Centers | Progress in Community Health Partnerships: Research, Education, and Action

Background: There is minimal comparative effectiveness research in Parkinson’s Disease (PD). Engaging people with PD in the research process through patient advisory boards (PAB) is one way to address this gap. Objectives: To describe the project model and lessons learned from a PAB pilot project in 5 Parkinson’s Foundation Centers of Excellence in comparative effectiveness research.
Methods: A virtual training and toolkit on patient engagement, PABs and comparative effectiveness research was created and used to implement PABs. Satisfaction and impact of the PAB training and pilot model was assessed via surveys.
Results/Lessons Learned: PAB participants (n=28) felt the training was comprehensive, their feedback was prioritized, and impacted the PAB goal of developing a comparative effectiveness research question. Recommendations include giving clinic staff protected time for patient engagement and providing funding.
Conclusions: The developed model led to an increase in participation in comparative effectiveness research and effectively trained staff, people with PD and care partners in patient engagement.