4.4 Article

Evaluating patient and public involvement in health research: from theoretical model to practical workshop

Journal

HEALTH EXPECTATIONS
Volume 20, Issue 5, Pages 826-835

Publisher

WILEY
DOI: 10.1111/hex.12486

Keywords

evaluation; health research; knowledge spaces; mapping experiences; public involvement; theoretical framework

Funding

  1. National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula
  2. National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care West
  3. Wellcome Trust Institutional Strategic Support Award [WT105618MA]
  4. ESRC [ES/I002391/1] Funding Source: UKRI
  5. Economic and Social Research Council [ES/I002391/1] Funding Source: researchfish

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BackgroundThere is a growing literature on evaluating aspects of patient and public involvement (PPI). We have suggested that at the core of successful PPI is the dynamic interaction of different forms of knowledge, notably lay and professional. We have developed a four-dimensional theoretical framework for understanding these interactions. AimWe explore the practical utility of the theoretical framework as a tool for mapping and evaluating the experience of PPI in health services research. MethodsWe conducted three workshops with different PPI groups in which participants were invited to map their PPI experiences on wall charts representing the four dimensions of our framework. The language used to describe the four dimensions was modified to make it more accessible to lay audiences. Participants were given sticky notes to indicate their own positions on the different dimensions and to write explanatory comments if they wished. Participants' responses were then discussed and analysed as a group. ResultsThe three groups were distinctive in their mapped responses suggesting different experiences in relation to having a strong or weak voice in their organization, having few or many ways of getting involved, addressing organizational or public concerns and believing that the organization was willing to change or not. DiscussionThe framework has practical utility for mapping and evaluating PPI interactions and is sensitive to differences in PPI experiences within and between different organizations. The workshops enabled participants to reflect collaboratively on their experiences with a view to improving PPI experiences and planning for the future.

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