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      Is Co-production Just a Pipe Dream for Applied Health Research Commissioning? An Exploratory Literature Review

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          Abstract

          Background and Rationale: Internationally, the idea of “co-production' has become more popular in health research because of the promise of partnership between researchers and patients to create research that focuses on patients' needs. Patient and public involvement (PPI) at an early stage in deciding what research should be funded, can improve the quality and impact of research. However, professional power over the process places limits on the public practising their participatory rights for involvement in commissioning research that affects them and can leave members of the public feeling unheard or excluded, particularly within the context of early phase applied health research.

          Aim: This article explores whether and how the public can be involved in the co-production of research commissioning early on in the process, with a focus on the power relations that pervade basic and early phase translational applied health research.

          Methods: An exploratory literature review of international peer-reviewed and gray health research literature using structured searches of electronic databases and key search terms.

          Results: There is very little literature that critically evaluates how PPI is embedded into the early phases of the commissioning process. The field of basic or early translational applied research appear to be particularly challenging. Four themes which emerged from the review are: reasons for PPI in research commissioning; benefits of PPI at strategic levels of research commissioning; contributions of patients and members of the public; improving PPI in research commissioning.

          Conclusion: Although the public are being consulted at some stages of the research commissioning process, it is evident that the process of determining research priorities and agendas is far from being widely co-produced. Moving PPI from a consultative paternalistic model to a collaborative partnership model should be a priority for commissioners. Significant changes to communication, practices, systems, structures, or cultures that exclude patients and the public from contributing in meaningful ways, are needed to fulfill the potential of co-produced models of research commissioning.

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          Using thematic analysis in psychology

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            Patient engagement in research: a systematic review

            Background A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? Methods We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. Results We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Conclusions Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
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              Mapping the impact of patient and public involvement on health and social care research: a systematic review.

              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.
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                Author and article information

                Contributors
                Journal
                Front Sociol
                Front Sociol
                Front. Sociol.
                Frontiers in Sociology
                Frontiers Media S.A.
                2297-7775
                24 June 2019
                2019
                : 4
                : 50
                Affiliations
                [1] 1Wessex Institute, University of Southampton , Southampton, United Kingdom
                [2] 2Independent Researcher, Research Support Northern Ireland , Killyleagh, Ireland
                [3] 3NHS England , Taunton, United Kingdom
                [4] 4Public Member of National Institute for Health Research Evaluation Trials and Studies Coordinating Centre Patient and Public Involvement Reference Group, University of Southampton , Southampton, United Kingdom
                Author notes

                Edited by: Annette Louise Boaz, Kingston University, United Kingdom

                Reviewed by: Alison O'Shea, Kingston University, United Kingdom; Hana Asfour, Parallel Perspective Consulting (Q Perspective), Jordan

                *Correspondence: Doreen Tembo d.tembo@ 123456soton.ac.uk

                This article was submitted to Medical Sociology, a section of the journal Frontiers in Sociology

                Article
                10.3389/fsoc.2019.00050
                8022834
                33869373
                a0001e4e-4dc3-452a-a422-b33ed85de932
                Copyright © 2019 Tembo, Morrow, Worswick and Lennard.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                : 13 February 2019
                : 27 May 2019
                Page count
                Figures: 1, Tables: 3, Equations: 0, References: 98, Pages: 12, Words: 10027
                Categories
                Sociology
                Review

                patient and public involvement,public engagement,co-creation of knowledge,co-production,research commissioning,research priority setting,citizen participation,biomedical

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