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

Area of Science:

• Neurology
• Clinical Research
• Patient Engagement

Background:

• Comparative effectiveness research (CER) in Parkinson's disease (PD) is limited.
• Patient advisory boards (PABs) offer a strategy to involve individuals with PD in research.
• Addressing the gap in CER requires innovative patient engagement methods.

Purpose of the Study:

• To outline a project model for implementing PABs in Parkinson's disease research.
• To share lessons learned from a pilot PAB initiative across five Parkinson's Foundation Centers of Excellence.
• To evaluate the effectiveness of patient engagement strategies in CER.

Main Methods:

• Developed and utilized a virtual training program and toolkit focused on patient engagement, PABs, and CER.
• Implemented PAB pilot projects within five Centers of Excellence.
• Assessed participant satisfaction and the impact of the training and pilot model through surveys.

Main Results:

• PAB participants (n=28) reported comprehensive training and that their feedback influenced the development of CER questions.
• The pilot model demonstrated success in training staff, individuals with PD, and care partners in patient engagement.
• Participant feedback indicated a positive impact on the PAB's goal of formulating CER questions.

Conclusions:

• The established PAB model successfully increased participation in comparative effectiveness research.
• The project effectively trained diverse stakeholders, including staff, people with PD, and care partners, in patient engagement techniques.
• Implementing PABs is a viable strategy to enhance patient involvement in PD research.