Abstract: Aim: To explore researchers’ and patient and public involvement (PPI) contributors’ views on training for PPI in clinical trials to inform the design of training for both parties.
Methods: Interviews with researchers and PPI contributors working on clinical trials between 2006 and 2010. The contributors had been involved in oversight or management roles, rather than contributing to carrying out the research.
Findings/ recommendations: There was little support for training PPI contributors. ‘Training’ for PPI contributors is often understood to mean ‘training in research methods’ and there was widespread concern that this might lead to contributors losing their patient perspective. The authors comment that training could in fact focus on how to maintain a patient perspective while being involved.
Not all PPI contributors received formal training and many concluded that what is more important is a proper induction. The authors suggest inductions would benefit from being more structured and allowing PPI contributors to negotiate their roles with researchers.
Researchers concluded that it was more important to find the ‘right’ contributor who already has the relevant skills and experience for a given role, than to provide training. This raises concerns about how to achieve diversity amongst PPI contributors. The authors suggest that it is important to think about the different ways in which PPI contributors can get involved in clinical trials. They recommend using more than one approach in order to benefit from different patient perspectives.
Although some people questioned what training in PPI for researchers would cover, there was more support for this training overall. The authors suggest that as some PPI contributors aren’t clear about their role, training that helps both researchers and PPI to learn about ‘how to do PPI’ would be beneficial, especially if this enabled them to learn from each other.
The authors conclude that we need to reconsider how training is conceptualised, designed and promoted. We also need to find ways to provide flexible, learning opportunities that reflect researchers’ and PPI contributors’ needs and preferences.
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Categories: journal article service users and carers researchers research commissioners relevant to all service users lessons from direct experience of involvement training and supporting service users staff in research organisations
Date Entered: 2015/07/06
Date Edited: 2015/07/06