Abstract
BackgroundMuch 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.ObjectiveThe 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.MethodsWe 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.ResultsThree 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).ConclusionOur 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.
Highlights
Definition of public involvement (PI)We have adopted the following definition of public involvement: the conduct of ‘research carried out “with” or “by” members of the public rather than “to,” “about” or “for” them’.1 we recognize there is no consensus, in this paper we have combined ‘involvement’ with the generic term ‘public’, to denote the range of people potentially involved as collaborators in research
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. (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
Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values
Summary
Definition of public involvement (PI)We have adopted the following definition of public involvement: the conduct of ‘research carried out “with” or “by” members of the public rather than “to,” “about” or “for” them’.1 we recognize there is no consensus, in this paper we have combined ‘involvement’ with the generic term ‘public’, to denote the range of people potentially involved as collaborators in research. We recognize there is no consensus, in this paper we have combined ‘involvement’ with the generic term ‘public’, to denote the range of people potentially involved as collaborators in research This could comprise particular population groups such as older or young people or carers, as well as patients and/or service users. Arguments in support of the involvement of the public in health and social care research have been characterized as normative or substantive.[2] Normative arguments reflect ethical and/ or political concerns They consider involvement as an end in itself, related to values such as rights, justice, fairness and democracy.[3] In the UK, the public funding of the National Health Service and much research raises questions of public accountability.[4] Public involvement is often justified normatively as a route to empower individuals or groups.[5,6]. These arguments emphasize the contribution public involvement may make to research including prioritizing different research questions and outcomes; increasing recruitment and improving retention by ensuring research processes are accessible; and assisting with recruitment of participants, data collection, data analysis and dissemination.[7,8]
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