study of researchers’ and patients’ interview accounts of training for patient and public involvement in clinical trials

Abstract
  Background: Training in patient and public involvement (PPI) is recommended, yet little is known about what  training is needed. We explored researchers’ and PPI contributors’ accounts of PPI activity and training to inform  the design of PPI training for both parties.  Methods: We used semi-structured qualitative interviews with researchers (chief investigators and trial managers)  and PPI contributors, accessed through a cohort of clinical trials, which had been funded between 2006 and 2010.  An analysis of transcripts of audio-recorded interviews drew on the constant comparative method.  Results: We interviewed 31 researchers and 17 PPI contributors from 28 trials. Most researchers could see some  value in PPI training for researchers, although just under half had received such training themselves, and some had  concerns about the purpose and evidence base for PPI training. PPI contributors were evenly split in their  perceptions of whether researchers needed training in PPI. Few PPI contributors had themselves received training  for their roles. Many informants across all groups felt that training PPI contributors was unnecessary because they  already possessed the skills needed. Informants were also concerned that training would professionalise PPI  contributors, limiting their ability to provide an authentic patient perspective. However, informants welcomed  informal induction ‘conversations’ to help contributors understand their roles and support them in voicing their  opinions. Informants believed that PPI contributors should be confident, motivated, intelligent, focussed on helping  others and have relevant experience. Researchers looked for these qualities when selecting contributors, and spoke  of how finding ‘the right’ contributor was more important than accessing ‘the right’ training.  Conclusions: While informants were broadly receptive to PPI training for researchers, they expressed considerable  reluctance to training PPI contributors. Providers of training will need to address these reservations. Our findings  point to the importance of reconsidering how training is conceptualised, designed and promoted and of providing  flexible, learning opportunities in ways that flow from researchers’ and contributors’ needs and preferences. We also  identify some areas of training content and the need for further consideration to be given to the selection of PPI  contributors and models for implementing PPI to ensure clinical trials benefit from a diversity of patient perspectives.