title: Values associated with public involvement in health and social care research: a narrative review.
abstract: BACKGROUND
  Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI.
  
  
  OBJECTIVE
  The narrative review reported here is part of a larger MRC-funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework.
  
  
  METHODS
  We undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty-four chapters in sixteen textbooks.
  
  
  RESULTS
  Three overarching value systems were identified, each containing five value clusters. (i) A system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; accountability/transparency; rights; and ethics (normative values). (ii). A system concerned with the consequences of public involvement in research including value clusters associated with effectiveness; quality/relevance; validity/reliability; representativeness/objectivity/generalizability; and evidence (substantive values). (iii) A system concerned with the conduct of public involvement in including value clusters associated with Partnership/equality; respect/trust; openness and honesty; independence; and clarity (process values).
  
  
  CONCLUSIONS
  Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values. The findings suggest that research teams should consider and make explicit the values they attach to PI in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of PI for researchers, lay experts and the research.
authors: Mood Disorders Centre, Psychology, University of Exeter, Exeter, UK.
authors: Felix
authors: F
authors: Gradinger
authors: Institute of Health Research, University of Exeter Medical School, Exeter, UK.
authors: Nicky
authors: N
authors: Britten
authors: Institute of Health Research, University of Exeter Medical School, Exeter, UK.
authors: Katrina
authors: K
authors: Wyatt
authors: Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK.
authors: Katherine
authors: K
authors: Froggatt
authors: Institute of Health Research, University of Exeter Medical School, Exeter, UK.
authors: Andy
authors: A
authors: Gibson
authors: Public Health and Policy, Institute of Psychology, Health & Society, University of Liverpool, Liverpool, UK.
authors: Ann
authors: A
authors: Jacoby
authors: Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK.
authors: Fiona
authors: F
authors: Lobban
authors: Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK.
authors: Debbie
authors: D
authors: Mayes
authors: Public Health and Policy, Institute of Psychology, Health & Society, University of Liverpool, Liverpool, UK.
authors: Dee
authors: D
authors: Snape
authors: Lancashire Care NHS Foundation Trust, Mental Health Research Network, North West Hub, Preston, UK.
authors: Tim
authors: T
authors: Rawcliffe
authors: Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK.
authors: Jennie
authors: J
authors: Popay
mesh_terms: D003256:Community Participation; D006302:Health Services Research; D006801:Humans; D033262:Narration; D019984:Quality Indicators, Health Care; D012945:Social Values
keywords: engagement; impact; involvement; participation; values