PPIE stands for ‘Person and Public Involvement and Engagement’. The idea is that we don’t want to conduct research about people without involving them in the process and sharing the outcomes of the project.

The Panel

Therefore, as part of the PPIE for this project, we have created a panel consisting of those living and affected by Parkinson’s, an optometrist and clinic owner, and the public. The panel meet quarterly via Zoom and are located across the country with varied life experience.

The aims of panel meetings are to discuss potential issues around OCTAHEDRON and how these may be resolved or explored further. From these discussions, two main concerns have arisen:

• The use of NHS data where consent is not possible
• Whether people would want to use the tool if offered it in a high street optician

The first point has led us to hold a ‘citizen’s jury’ with the panel (Public Panel Meeting 3).

The second point has led us to create a spin-off study to explore the factors that may affect this. ‌

We are extremely grateful to all of our panel members for their valuable input and perspectives:

• Russ Bradford
• Charlotte Allen
• Neil Benny
• Nina Jackson-Benny
• Nathan Davies
• Anna Ferguson Montague
• Lynne Wright 
• Aden Kwok 
• Joanna C
• Carrol Lamouline
• Simon Berry