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      Consumer engagement in doctoral research – what difference does it make?

      research-article
      1 , , 2 , 1
      Spinal Cord
      Nature Publishing Group UK
      Public health, Rehabilitation

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          Abstract

          Study design

          Qualitative reflective descriptive study.

          Objective

          To evaluate a consumer engagement experience in the context of doctoral research.

          Setting

          Full time doctoral research at an Australian university.

          Method

          A reflective evaluation of consumer engagement was completed, presented using the Guidance for Reporting Involvement of Patients and the Public, and frameworks of the research cycle, levels of consumer participation and integrated knowledge translation guiding principles providing theoretical background. Seven people with SCI ( n = 6 men, n = 1 woman) replied to an expression of interest to join a Consumer Advisory Group for a doctoral researcher. Activities included: four 90-minute meetings, formal and ad-hoc email exchanges, and one-to-one conversations as required. Data sources included meeting transcripts, email correspondence, researcher’s notes, and a short consumer survey.

          Results

          Consumer engagement occurred at each stage of the research cycle and met all guiding principles. Consumers participated at consultation and involving levels, however, collaboration evolved. Enablers included a common interest for the research topic, rapport with the researcher, using a virtual platform to disseminate research findings, supervisory support, and availability of funding. Challenges included complexity in harnessing different perspectives, using a virtual platform for group meetings, time, and consumers’ negative experiences of media.

          Conclusion

          Consumer engagement informed doctoral research by promoting nuanced perspectives on the unique experiences of living with SCI, providing unanticipated richness to data analysis. Building trust, and being responsive, led to in-depth consumer participation.

          Related collections

          Most cited references22

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          GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

          GRIPP2 (short form and long form) is the first international guidance for reporting of patient and public involvement in health and social care research. This paper describes the development of the GRIPP2 reporting checklists, which aim to improve the quality, transparency, and consistency of the international patient and public involvement (PPI) evidence base, to ensure that PPI practice is based on the best evidence
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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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                Author and article information

                Contributors
                Leanne.Rees@latrobe.edu.au
                Journal
                Spinal Cord
                Spinal Cord
                Spinal Cord
                Nature Publishing Group UK (London )
                1362-4393
                1476-5624
                30 December 2022
                : 1-9
                Affiliations
                [1 ]GRID grid.1018.8, ISNI 0000 0001 2342 0938, School of Allied Health, Human Services and Sport, , La Trobe University, ; Melbourne, Australia
                [2 ]GRID grid.1018.8, ISNI 0000 0001 2342 0938, Department of Politics, Media and Philosophy, , La Trobe University, ; Melbourne, Australia
                Author information
                http://orcid.org/0000-0002-7911-2464
                http://orcid.org/0000-0003-3671-3304
                http://orcid.org/0000-0002-6840-2378
                Article
                871
                10.1038/s41393-022-00871-1
                9802020
                36585485
                afc8bb40-bdd9-4494-9bed-eb5e37232ca7
                © The Author(s), under exclusive licence to International Spinal Cord Society 2022, Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

                This article is made available via the PMC Open Access Subset for unrestricted research re-use and secondary analysis in any form or by any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.

                History
                : 5 June 2022
                : 14 December 2022
                : 16 December 2022
                Funding
                Funded by: Australian Government Research Training Grant
                Categories
                Article

                Neurology
                public health,rehabilitation
                Neurology
                public health, rehabilitation

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