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      Patient and public involvement and engagement: Practice case study with reflections and learnings from a small rural district general hospital

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      Research for All

      UCL Press

      public, involvement, engagement, health, research

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          Abstract

          The notion of patient and public involvement and engagement (PPIE) in research has been around for some time, and it is considered essential to ensure high-quality relevant research that is shared and that will make a difference. This case study of practice aims to share the PPIE practice from Dorset County Hospital NHS Foundation Trust, a small rural district general hospital. It describes the process of recruiting patients and members of the public as research volunteers, as well as the plethora of engagement and involvement activities with which they have been involved to date. This is followed by a reflection on the process and an overview of plans for the future, highlighting key challenges as well as learnings. A dedicated role to support/oversee PPIE activities is recommended to coordinate large groups of research volunteers, as well as to monitor the important impact of their input, which is considerable. Increasing diversity and access to under-served groups, and embedding the research volunteer role within the wider clinical research team, are also highlighted as fundamental challenges, as well as opportunities to make the most from this valuable resource. The case study of practice puts forward a recommendation to all research departments to embed PPIE in all of the work that they do.

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          Clarifying the roles of patients in research

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            More than just ticking a box…how patient and public involvement improved the research design and funding application for a project to evaluate a cycling intervention for hip osteoarthritis

            Plain English summary Involving patients and the public in research helps to ensure that research remains relevant, and has an impact on the people it aims to benefit. Funding bodies now require patients and the public to be involved at all stages of research. Patients and members of the public were involved from the outset in research into a cycling and education programme for hip osteoarthritis. A group discussion took place with six participants from a trial of the programme. The group provided feedback on several areas including the relevance of the research, how the researchers proposed to recruit patients, the research design, the programme itself (including what they liked/didn’t like about it), and how the researchers could publicise the research findings. The feedback received was invaluable, and helped shape the entire research project and funding application. The cycling and education programme has been extended in line with comments received from the group. They also helped identify the best way of gathering information from research participants and had suggestions for sharing the results, both of which were incorporated into the funding application. Often involving patients and the public in research can be seen as a ‘tick box’ exercise. However, this example shows how crucial involving patients and the public in research design is. It also shows how the funding application was made stronger as a result of patient input. Researchers should be encouraged to work closely with patients and the public to ensure their research is of the highest quality. Abstract Background Involving patients and the public in research is an essential activity to ensure relevant, accessible, and appropriate research. There is increasing obligation from funding bodies on researchers to have well thought through plans for involving the public, and indeed it is often a condition for funding. Patient and public involvement activity in this project was conducted to inform a funding application to investigate the effectiveness of a cycling and education intervention in the treatment of hip osteoarthritis. Methods Six participants from a feasibility programme of the intervention attended a two-hour patient and public involvement consultation group to provide feedback on various aspects of the proposed research and intervention. During the consultation group, two independent facilitators followed a detailed plan formulated with the research team. Feedback was validated by the attendees via email following the consultation, and a report was issued to the research team. Further feedback on subsequent changes was sought via email and telephone with members of a Patient Advisory Group. Results The patient and public involvement consultation group provided invaluable feedback and suggestions which impacted on the design and quality of the research project and the intervention. Key changes to the intervention included extending the duration of the cycling programme from six to eight weeks, and inclusion of an exercise diary to promote adherence to the intervention. Key feedback regarding the design of the research and funding application included suggestions for methods of dissemination, and confirmation of the primary outcome measure. Conclusions Patient and public involvement was crucial to the design of the proposed research and intervention. It informed many aspects of the research design and made the funding application stronger as a result. Involving patients and the public in research is much more than an obligation, or ‘tick box’ exercise. It can change and improve research quality, which is crucial when answering questions that are meaningful and important to patients, and which leads to increased impact. Collaboration with patients and the public should be planned and reported from the conception of a research idea where the impact of such input can be considerable.
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              Volunteers wanted to shape the future of Dorset’s health care

               A Cook (2017)
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                Author and article information

                Journal
                rfa
                Research for All
                UCL Press (UK )
                2399-8121
                21 September 2021
                : 5
                : 2
                : 438-447
                Affiliations
                Dorset County Hospital NHS Foundation Trust, UK
                Clinical Research Network Wessex, National Institute for Health Research, UK
                Author notes
                *Corresponding author – email: zoe.sheppard@ 123456dchft.nhs.uk
                Article
                10.14324/RFA.05.2.16
                Copyright © 2021 Sheppard, Williams, Lawson and Appleby

                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.

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                Tables: 1, References: 16, Pages: 11
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