title: Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study.
abstract: There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals.
  
  
  
  To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed.
  
  
  
  Qualitative interview study.
  
  
  
  Thirty-eight PPI contributors involved in health research across the UK.
  
  
  
  Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the 'expert in lived experience', the 'creative outsider', the 'free challenger', the 'bridger', the 'motivator' and the 'passive presence'. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved.
  
  
  
  While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors' potential impact and their motivation to stay involved.
authors.affiliation: NIHR Oxford Biomedical Research Centre, Oxford, UK.|Health Experiences Institute, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
authors.forename: Joanna C
authors.identifier: 0000-0002-8223-0349
authors.initials: JC
authors.lastname: Crocker
authors.affiliation: Health Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.|NIHR Collaboration for Leadership in Applied Health Research and Care Oxford, Oxford Health NHS Foundation Trust, Oxford, UK.
authors.forename: Anne-Marie
authors.initials: AM
authors.lastname: Boylan
authors.affiliation: UK.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Bostock
authors.affiliation: NIHR Oxford Biomedical Research Centre, Oxford, UK.|Health Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
authors.forename: Louise
authors.initials: L
authors.lastname: Locock
mesh_terms: D000328:Adult; D000368:Aged; D035843:Biomedical Research; D003256:Community Participation / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010358:Patient Participation / Q000523:psychology*; D015397:Program Evaluation; D036301:Qualitative Research; D006113:United Kingdom
keywords: evaluation; impact; patient involvement; public involvement; user involvement