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People who are affected by Parkinson’s are at the heart of the UK PD-CSG.
People who are affected by Parkinson’s are at the heart of the UK PD-CSG.
Patient and Public Involvement (PPI) members will represent those affected by Parkinson's.
Patient and Public Involvement (PPI) members will represent those affected by Parkinson's.
They will play a key role in the following activities of the UK PD-CSG:
They will play a key role in the following activities of the UK PD-CSG:
The Direction
The Direction
PPI members will direct the group towards the research areas most important to those affected by Parkinson's. This will be imperative to ensure that the research is aligned with patient wishes and has the potential to have a meaningful impact.
The Logistics
The Logistics
Engagement and participation is essential to the success of research. It is therefore important that Parkinson's research opportunities will be accessible and logistically feasible for people with Parkinson's. This will ensure that the studies are appropriate, suitable and enjoyable for those taking part, minimise drop out rate and increase participation.
The Impact
The Impact
PPI groups will be able to help review which areas of research have been a success and also help to identify areas for improvement. This feedback will form a crucial part of any research supported by the UK PD-CSG.
The Priorities
The Priorities
PPI members will be able to help determine which of the studies are most in important to those affected by Parkinson's.
- PPI members are invited to attend the regular meetings and take part in discussions.
- Briefing and debriefing meetings take place before and after the regular meetings respectively. These are a safe space and facilitate open discussion.
- PPI input will be encouraged, respected and extremely valued.
Find out more about PPI Support in our Resources for Researchers Page
Find out more about PPI Support in our Resources for Researchers Page
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