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      Patient and public involvement in research: from tokenistic box ticking to valued team members

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          Abstract

          Background

          Patient and public involvement (PPI) in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research. To be meaningful, all stakeholders need to actively engage in this exchange of expertise. However, despite some funders requiring PPI plans to be included in grant applications, there remains a gap between what is expected and what is delivered.

          Main body

          As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR), we set out to create a supportive, organised environment with the overarching value of ‘keeping patients at the heart of everything we do’. The key has been in planning and creating a suitably funded organisational infrastructure with dedicated PPI researchers along with the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a working mode that we hope will last. Regular interactions and proactive Patient Leads increase PPI network cohesion.

          Conclusion

          With adaptation, the AUKCAR PPI model can be translated to international contexts.

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          Most cited references14

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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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            From tokenism to empowerment: progressing patient and public involvement in healthcare improvement

            Background There have been repeated calls to better involve patients and the public and to place them at the centre of healthcare. Serious clinical and service failings in the UK and internationally increase the urgency and importance of addressing this problem. Despite this supportive policy context, progress to achieve greater involvement is patchy and slow and often concentrated at the lowest levels of involvement. Methods A selective narrative literature search was guided by the authors’ broad expertise, covering a range of disciplines across health and social care, policy and research. Published systematic literature reviews were used to identify relevant authors and publications. Google and hand searches of journal articles and reference lists and reports augmented identification of recent evidence. Results Patients and the wider public can be involved at most stages of healthcare, and this can have a number of benefits. Uncertainty persists about why and how to do involvement well and evaluate its impact, how to involve and support a diversity of individuals, and in ways that allow them to work in partnership to genuinely influence decision-making. This exposes patient and public involvement (PPI) to criticisms of exclusivity and tokenism. Conclusions Current models of PPI are too narrow, and few organisations mention empowerment or address equality and diversity in their involvement strategies. These aspects of involvement should receive greater attention, as well as the adoption of models and frameworks that enable power and decision-making to be shared more equitably with patients and the public in designing, planning and co-producing healthcare.
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              A systematic review of the impact of patient and public involvement on service users, researchers and communities.

              Patient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research.
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                Author and article information

                Contributors
                tracy.jackson@ed.ac.uk
                Journal
                BMC Med
                BMC Med
                BMC Medicine
                BioMed Central (London )
                1741-7015
                13 April 2020
                13 April 2020
                2020
                : 18
                : 79
                Affiliations
                [1 ]GRID grid.4305.2, ISNI 0000 0004 1936 7988, Asthma UK Centre for Applied Research, , University of Edinburgh, ; Edinburgh, UK
                [2 ]GRID grid.4305.2, ISNI 0000 0004 1936 7988, Usher Institute, University of Edinburgh, ; Edinburgh, UK
                [3 ]GRID grid.4305.2, ISNI 0000 0004 1936 7988, NIHR Global Health Research Unit on Respiratory Health, University of Edinburgh, ; Edinburgh, UK
                [4 ]GRID grid.10347.31, ISNI 0000 0001 2308 5949, Department of Primary Care Medicine, , University of Malaya, ; Kuala Lumpur, Malaysia
                [5 ]GRID grid.4868.2, ISNI 0000 0001 2171 1133, Asthma UK Centre for Applied Research, , Queen Mary University of London, ; London, UK
                [6 ]GRID grid.4868.2, ISNI 0000 0001 2171 1133, Department of Public Health and Primary Care, , Queen Mary University of London, ; London, UK
                Article
                1544
                10.1186/s12916-020-01544-7
                7153227
                32279658
                8dd1be41-d085-4008-984f-2721942a08e2
                © The Author(s) 2020

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 10 October 2019
                : 28 February 2020
                Funding
                Funded by: Asthma UK (GB)
                Award ID: AUK-AC-2018-01
                Award Recipient :
                Funded by: National Institute for Health Research (GB)
                Award ID: 16/136/109
                Award Recipient :
                Categories
                Opinion
                Custom metadata
                © The Author(s) 2020

                Medicine
                patient and public involvement,community engagement,research,health
                Medicine
                patient and public involvement, community engagement, research, health

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