The Possibilities and Limits of “Co-producing” Research

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. To identify the impact of patient and public involvement on health and social care research. A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist. All study types that reported the impact PPI had on the health and/or social care research study. A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade. © 2012 John Wiley & Sons Ltd.

Public involvement in healthcare is a prominent policy in countries across the economically developed world. A growing body of academic literature has focused on public participation, often presenting dichotomies between good and bad practice: between initiatives that offer empowerment and those constrained by consumerism, or between those which rely for recruitment on self-selecting members of the public, and those including a more broad-based, statistically representative group. In this paper I discuss the apparent tensions between differing rationales for participation, relating recent discussions about the nature of representation in public involvement to parallel writings about the contribution of laypeople's expertise and experience. In the academic literature, there is, I suggest, a thin line between democratic justifications for involvement, suggesting a representative role for involved publics, and technocratic ideas about the potential 'expert' contributions of particular subgroups of the public. Analysing recent policy documents on participation in healthcare in England, I seek moreover to show how contemporary policy transcends both categories, demanding complex roles of involved publics which invoke various qualities seen as important in governing the interface between state and society. I relate this to social-theoretical perspectives on the relationship between governmental authority and citizens in late-modern society.