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      Different in so many ways: Exploring consumer, health service staff, and academic partnerships in a research advisory group through rapid ethnography

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          Abstract

          Introduction

          Consumer and community involvement (CCI) encompasses the range of consumer engagement activities across the research cycle. Research advisory groups (RAGs) are a common method of CCI that may empower the consumer voice in research. However, there is limited evaluation of RAGs to guide occupational therapists considering this as a CCI strategy in research. The aim of this study was to explore the processes and outcomes of a RAG partnership for an eDelphi study.

          Methods

          Rapid ethnography enabled a rich, thick description of the RAG through triangulation of field notes, a monthly research team log, focus groups, and an individual interview. Data were analysed using reflexive thematic analysis. Recruitment targeted consumers, health service staff, and academics with experience in CCI to enhance the diversity of perspectives guiding the eDelphi study. The RAG met four times over 4 months.

          Findings

          Seven diverse RAG members were recruited resulting in a RAG of 12 members, including the research team that included two consumers. Reflexive thematic analysis resulted in an overarching theme: Different in so many ways, which reinforced that authentic CCI in research continues to be rare even for stakeholders with experience in CCI. There were four subthemes: Set up for success, Authentic and capable facilitation, Structures and strategies for genuine partnerships, and A ripple effect of benefits. Findings added to the limited research regarding RAGs and highlighted that a short‐term RAG with 12 diverse stakeholders was an effective strategy to foster mutually beneficial and meaningful collaboration. Partnering with two consumer co‐researchers in RAG planning, implementation, and evaluation was central to success.

          Conclusion

          Findings demonstrated that with careful co‐planning and recruitment, capable facilitation with support of a committed research team (inclusive of consumers), and empowering meeting processes and structures, a short‐term RAG resulted in many benefits to participants and enhanced research outcomes.

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          Most cited references40

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          One size fits all? What counts as quality practice in (reflexive) thematic analysis?

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

            Background While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why. Objective To develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2. Methods The EQUATOR method for developing reporting guidelines was used. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process. Results One hundred forty-three participants agreed to participate in round one, with an 86% (123/143) response for round two and a 78% (112/143) response for round three. The Delphi survey identified the need for long form (LF) and short form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections and is suitable for studies where the main focus is PPI. GRIPP2-SF includes five items on aims, methods, results, outcomes, and critical perspective and is suitable for studies where PPI is a secondary focus. Conclusions GRIPP2-LF and GRIPP2-SF represent the first international evidence based, consensus informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. In order to encourage its wide dissemination this article is freely accessible on The BMJ and Research Involvement and Engagement journal websites. Electronic supplementary material The online version of this article (doi:10.1186/s40900-017-0062-2) contains supplementary material, which is available to authorized users.
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              Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

              Abstract Background Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. Objective The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. Search Strategy, Inclusion Criteria, Data Extraction and Synthesis We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data. Main Results We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were “respect” (n = 25, 45%) and “equitable power between all team members” (n = 21, 38%). Creating “trust between patient stakeholders and researchers” was described in 17 (31%) articles. Twenty‐seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders’ time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement. Discussion and Conclusions Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient‐centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.
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                Author and article information

                Contributors
                ruth.cox@health.qld.gov.au
                Journal
                Aust Occup Ther J
                Aust Occup Ther J
                10.1111/(ISSN)1440-1630
                AOT
                Australian Occupational Therapy Journal
                John Wiley and Sons Inc. (Hoboken )
                0045-0766
                1440-1630
                24 July 2022
                December 2022
                : 69
                : 6 , Partnering with Consumers in Care, Research, and Education ( doiID: 10.1111/aot.v69.6 )
                : 676-688
                Affiliations
                [ 1 ] Occupational Therapy Department Queen Elizabeth II Jubilee Hospital Coopers Plains Queensland Australia
                [ 2 ] Discipline of Occupational Therapy, School of Health Sciences and Social Work Griffith University Queensland Australia
                [ 3 ] Acquired Brain Injury Outreach Service and Transitional Rehabilitation Program Princess Alexandra Hospital Buranda Queensland Australia
                [ 4 ] School of Health Sciences and Social Work Griffith University Meadowbrook Queensland Australia
                Author notes
                [*] [* ] Correspondence

                Ruth Cox, Occupational Therapy Department, Queen Elizabeth II Jubilee Hospital, Corner Kessels and Troughton Roads, Coopers Plains, QLD 4108, Australia.

                Email: ruth.cox@ 123456health.qld.gov.au

                Author information
                https://orcid.org/0000-0002-5037-5375
                https://orcid.org/0000-0002-6671-4140
                https://orcid.org/0000-0002-2761-2627
                https://orcid.org/0000-0002-7420-6779
                Article
                AOT12830
                10.1111/1440-1630.12830
                10087328
                35871761
                8cdc0131-509e-4a8b-a1f3-e9c8242eaa65
                © 2022 The Authors. Australian Occupational Therapy Journal published by John Wiley & Sons Australia, Ltd on behalf of Occupational Therapy Australia.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 03 May 2022
                : 16 February 2022
                : 09 July 2022
                Page count
                Figures: 1, Tables: 3, Pages: 13, Words: 9014
                Categories
                Feature Article
                Feature Articles
                Custom metadata
                2.0
                December 2022
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.2.7 mode:remove_FC converted:11.04.2023

                consumer and community engagement,consumer participation,partnering with consumers,research advisory group

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