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The role of patient organisations in patient involvement

In 2005 Parkinson’s UK, the national patient organisation for people affected by Parkinson’s disease in the UK, ran a pilot project to facilitate meaningful and high quality Patient and Public Involvement (PPI) in Parkinson’s research. The role of patient organisations in supporting involvement in research has largely been unexplored and the organisation felt it vital to have the project independently evaluated. 


There were eight research teams in five different locations all over the UK and 65 people affected by the condition trained as PPI volunteers. Parkinson’s UK, funded and facilitated the first meeting between the researchers and PPI volunteers and supported any follow-up involvement activities after that meeting.


Through the independent evaluation of the project, Parkinson’s UK found out about the impact of involvement on both the research and the individuals that took part, the practical challenges to involvement and lessons learnt. They now want to use this evidence to empower researchers and patients to work in partnership, and encourage other organisations to understand new ways that they can support involvement.

You can read the two page executive summary of the results here.

To find out more about the Parkinson’s UK PPI programme visit www.parkinsons.org.uk/researchinvolvement or email Isabelle Abbey-Vital .