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      Collaboration between doctoral researchers and patient research partners: reflections and considerations

      research-article
      1 , , 2
      Research for All
      UCL Press
      collaboration, patient and public engagement, impact, reflection, doctoral research

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          Abstract

          A key principle of working in collaboration with patient research partners (patients contributing to research projects as team members, rather than as participants) is that they should be equal partners with researchers and health professionals. This presents a challenge in doctoral research, where students are expected to own their research decisions. Consequently, efforts are required to ensure that patient partners’ involvements are not tokenistic. This case study brings together the reflections of a recently completed doctoral student and a patient partner, who was part of the doctoral supervisory team. It discusses the role that the patient partner took during the doctorate and the activities in which he was involved. Both the researcher and the patient partner reflect on their expectations and experiences of collaboration. These reflections include factors that facilitated good working practices, the process of building rapport, and the benefits each got out of their collaboration. The interactions exploring ‘the dance of academia’ (the processes that were formally part of the PhD process or the aspects of academic work that were not directly related to completing the research) required recognition. Open, ongoing communication and practical considerations to support the patient partner were key to establishing a strong working relationship, and to determining what a meaningful contribution looked like at each stage of the process. Working with a patient partner as a doctoral student adds value to the doctoral process, and it is a vital opportunity to develop good practice as a researcher.

          Most cited references14

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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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            Impact of patient involvement in mental health research: longitudinal study.

            It is deemed good practice to involve patients routinely in research but no study has investigated the practical benefits, particularly to successful recruitment. To identify whether patient involvement is associated with study success. All studies listed on the Mental Health Research Network (MHRN) portfolio database (n = 374) were interrogated using logistic regression, ANOVA and Pearson's correlation to identify associations with study characteristics, funding bodies and recruitment success. Patient involvement increased over time although in some areas of research it was limited. Some funders, especially the National Institute for Health Research (NIHR), had more associated patient involvement than others. Studies that involved patients to a greater extent were more likely to have achieved recruitment targets (χ(2) = 4.58, P<0.05), defined as reaching at least 90% of the target. This is the first time associations with study success have been identified for patient involvement. Researchers might now consider ways to involve patients more comprehensively as this is associated with study success. Further research is needed to explore this finding.
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              European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects.

              To develop recommendations to enable successful inclusion of the patient perspective in European League Against Rheumatism (EULAR)-funded scientific research projects. The EULAR standardised operational procedures for guideline development were followed. A systematic literature review was presented during a first task force meeting, including 3 rheumatologists, 1 rheumatologist/epidemiologist, 2 allied health professionals, 2 representatives of arthritis research organisations and 7 patient representatives, resulting in 38 statements. A Delphi method was carried out to reduce and refine the statements and agree on a set of eight. Next, a survey among a wider group of experts, professionals and patient representatives (n=42), was completed. Feedback from this wider group was discussed at the second meeting and integrated in the final wording of the recommendations. Subsequently, the level of agreement of the group of experts (n=81) was re-evaluated. The project resulted in a definition of patient research partner and agreement on a set of eight recommendations for their involvement in research projects. These recommendations provide practical guidance for organising patient participation, capturing (1) the role of patient research partners, (2) phase of involvement, (3) the recommended number, (4) recruitment, (5) selection, (6) support, (7) training and (8) acknowledgement. Collaboration between patients and professionals in research is relatively new. Trials or effectiveness studies are not yet available. Nevertheless, it is possible to define recommendations for the inclusion of patients in research following a solid expert opinion based consensus process.
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                Author and article information

                Journal
                rfa
                Research for All
                UCL Press (UK )
                2399-8121
                20 January 2022
                : 6
                : 1
                : e06102
                Affiliations
                [1 ]School of Healthcare Sciences, Cardiff University, UK
                [2 ]Patient Research Partner, Rheumatology Department, Bristol Royal Infirmary, UK
                Author notes
                Author information
                https://orcid.org/0000-0002-7253-0751
                Article
                10.14324/RFA.06.1.02
                a9372481-3e16-4408-9bb0-5f43dfc46642
                Copyright 2022, Bethan Jones and Andrew Hunt

                This is an open-access article distributed under the terms of the Creative Commons Attribution Licence (CC BY) 4.0 https://creativecommons.org/licenses/by/4.0/, which permits unrestricted use, distribution and reproduction in any medium, provided the original author and source are credited.

                History
                : 24 November 2020
                : 07 July 2021
                Page count
                References: 15, Pages: 9
                Categories
                Article

                Assessment, Evaluation & Research methods,Education & Public policy,Educational research & Statistics
                doctoral research,patient and public engagement,impact,reflection,collaboration

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