Lessons Learned from a Parkinson's Research Patient Advisory Board Model with Academic Centers.

BACKGROUND

There is minimal comparative effectiveness research (CER) 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 five Parkinson's Foundation Centers of Excellence in CER.

METHODS

A virtual training and toolkit on patient engagement, PABs and CER was created and used to implement PABs. Satisfaction and impact of the PAB training and pilot model was assessed via surveys.Results and Lessons Learned: PAB participants (n = 28) felt the training was comprehensive, their feedback was prioritized, and impacted the PAB goal of developing a CER 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 CER and effectively trained staff, people with PD and care partners in patient engagement.