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      Public involvement and engagement in primary and emergency care research: the story from PRIME Centre Wales

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          Abstract

          Background

          Policy throughout the United Kingdom promotes involvement of patients and public members in research to benefit patient care and health outcomes. PRIME Centre Wales is a national research centre, developing and coordinating research about primary and emergency care which forms 90% of health service encounters. In this paper, we describe our approach to public involvement and engagement in PRIME Centre Wales (hereafter called PRIME), in particular: how this approach has developed; ways in which public members contribute to PRIME activity; the strengths and limitations of our approach, challenges and future opportunities. PRIME ensures work is relevant to service users, carers, the public and policy makers by incorporating comprehensive patient and public involvement in every phase of our work.

          Approach

          PRIME has policies and processes to enable and promote successful public involvement and engagement across research activities. This ensures public perspectives and patient experiences are integrated throughout research development, implementation and dissemination and in managing and delivering PRIME strategy over a 10 year timescale. A public/patient group called SUPER is a key resource providing wide-ranging perspectives via email and face-to-face discussion. We collect information on processes and experiences to assess value and impact, to guide ongoing involvement and engagement. A funded post provides leadership and support to staff and to public/patient contributors to facilitate collaborations.

          Discussion

          A stable, well-resourced structure has provided the timescales to build strong relationships and embed diverse approaches to public involvement and engagement within PRIME. Researchers and public contributors have committed to collaborations, developed knowledge and skills and sustained relationships. Effective approaches incorporate values and actions which, when operating together, strengthen processes and outcomes of public involvement and engagement.

          Conclusion

          Supportive context, motivation and time are necessary to foster values and practices that enable effective public involvement and engagement. PRIME has embedded public involvement and engagement across research activities and structures. Central is the public/patient group SUPER offering experience-based expertise to add value to the research cycle. This innovative model, aligned with best practice, enhances relevance and quality of primary and emergency care research to benefit patients and the general population.

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          Most cited references25

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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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            Patient and service user engagement in research: a systematic review and synthesized framework.

            There is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.
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              ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

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                Author and article information

                Journal
                Int J Popul Data Sci
                Int J Popul Data Sci
                IJPDS
                International Journal of Population Data Science
                Swansea University
                2399-4908
                30 September 2020
                2020
                : 5
                : 3
                : 1363
                Affiliations
                [1 ]Swansea University Medical School, ILS 2, Singleton Campus, Swansea, SA2 8PP, UK
                [2 ]SUPER, c/o Swansea University Medical School ILS 2, Singleton Campus Swansea, SA2 8PP, UK
                [3 ]Division of Population Medicine, Cardiff University, Cardiff, Wales, CF10 3AT, UK
                [4 ]Faculty of Life Sciences and Education, University of South Wales, Pontypridd, CF37 1DL, UK
                Author notes
                [*] [* ]Corresponding author: Bridie Angela Evans b.a.evans@ 123456swansea.ac.uk
                Article
                5:3:1363 S2399490820013634
                10.23889/ijpds.v5i3.1363
                7894248
                33644413
                979351dd-b473-4b59-82a8-5c336a3c8e07

                This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

                History
                Categories
                Population Data Science

                public involvement,public engagement,consumer involvement,primary care research,emergency care research

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