Values associated with public involvement in health and social care research: a narrative review

<jats:title>Abstract</jats:title><jats:sec><jats:title>Background</jats:title><jats:p>Much has been written about public involvement (<jats:styled-content style="fixed-case">PI</jats:styled-content>) 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 <jats:styled-content style="fixed-case">PI</jats:styled-content>.</jats:p></jats:sec><jats:sec><jats:title>Objective</jats:title><jats:p>The narrative review reported here is part of a larger <jats:styled-content style="fixed-case">MRC</jats:styled-content>‐funded study which is producing a framework and related guidance on assessing the impact of <jats:styled-content style="fixed-case">PI</jats:styled-content> in health and social care research. The review aimed to identify and characterize the range of values associated with <jats:styled-content style="fixed-case">PI</jats:styled-content> that are central elements of the framework.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>We undertook a review and narrative synthesis of diverse literatures of <jats:styled-content style="fixed-case">PI</jats:styled-content> in health and social care research, including twenty existing reviews and twenty‐four chapters in sixteen textbooks.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>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).</jats:p></jats:sec><jats:sec><jats:title>Conclusion</jats:title><jats:p>Our review identified three systems associated with <jats:styled-content style="fixed-case">PI</jats:styled-content> 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 <jats:styled-content style="fixed-case">PI</jats:styled-content> in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of <jats:styled-content style="fixed-case">PI</jats:styled-content> for researchers, lay experts and the research.</jats:p></jats:sec>