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      User involvement in the making: Positions and types of knowledge enacted in the interaction between service users and researchers in user panel meetings

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          Abstract

          Background

          Numerous studies of user involvement in research have been conducted. However, there is a lack of studies applying observational methods and addressing the concrete practice of involvement.

          Objective

          To determine what knowledge types and competences users apply when involved in the research process through user panel meetings.

          Design

          User panel meetings in a qualitative project in rehabilitation were sound‐recorded and transcribed verbatim. Data analysis applied an abductive approach framed by positioning theory.

          Setting and participants

          Six rehabilitation service users and a similar number of researchers met 20 times during a six‐year project period. They discussed various issues in the research process such as interview guides, analysis and dissemination of results.

          Findings

          The service users combined their respective knowledge and competence into six positions enacted in the panel interactions. They engaged as co‐researchers, based their contributions on their respective personal histories, represented an NGO and peers, applied their respective professional and educational backgrounds and, finally, engaged as concerned citizens.

          Discussion and conclusion

          The findings add to the discussion of professionalization of user involvement by introducing a wider array of positions enacted than do the findings of previous studies. Researchers recruiting user panel members, as well as NGOs appointing candidates for user panels, are advised to consider a wide competence profile for possible candidates. A panel is also considered as a resource in confirming and elaborating on a study's findings.

          Patient and public contribution

          A service user panel contributed to the study.

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          Most cited references25

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          Patient engagement in research: a systematic review

          Background A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? Methods We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. Results We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Conclusions Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
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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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              Shedding the cobra effect: problematising thematic emergence, triangulation, saturation and member checking.

              Qualitative research is widely accepted as a legitimate approach to inquiry in health professions education (HPE). To secure this status, qualitative researchers have developed a variety of strategies (e.g. reliance on post-positivist qualitative methodologies, use of different rhetorical techniques, etc.) to facilitate the acceptance of their research methodologies and methods by the HPE community. Although these strategies have supported the acceptance of qualitative research in HPE, they have also brought about some unintended consequences. One of these consequences is that some HPE scholars have begun to use terms in qualitative publications without critically reflecting on: (i) their ontological and epistemological roots; (ii) their definitions, or (iii) their implications.
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                Author and article information

                Contributors
                Role: Professorpersol@oslomet.no
                Role: Professor
                Role: Professor
                Journal
                Health Expect
                Health Expect
                10.1111/(ISSN)1369-7625
                HEX
                Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                John Wiley and Sons Inc. (Hoboken )
                1369-6513
                1369-7625
                28 May 2021
                August 2021
                : 24
                : 4 ( doiID: 10.1111/hex.v24.4 )
                : 1424-1432
                Affiliations
                [ 1 ] Department of Physiotherapy Oslo Metropolitan University Oslo Norway
                [ 2 ] Department of Occupational Therapy, Prosthetics and Orthotics Oslo Metropolitan University Oslo Norway
                [ 3 ] Department of Physical Medicine & Rehabilitation Oslo University Hospital Oslo Norway
                Author notes
                [*] [* ] Correspondence

                Per Koren Solvang, Department of Physiotherapy, Oslo Metropolitan University, Oslo, Norway.

                Email: persol@ 123456oslomet.no

                Author information
                https://orcid.org/0000-0002-6494-3417
                Article
                HEX13281
                10.1111/hex.13281
                8369089
                34048617
                42101340-e7d6-47c4-924f-8b40345cb2e3
                © 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.

                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
                : 18 March 2021
                : 04 February 2021
                : 29 April 2021
                Page count
                Figures: 0, Tables: 2, Pages: 9, Words: 7184
                Funding
                Funded by: Norges Forskningsråd , doi 10.13039/501100005416;
                Award ID: 229082
                Funded by: Research Council of Norway , doi 10.13039/501100005416;
                Award ID: 229082
                Categories
                Original Article
                Original Articles
                Custom metadata
                2.0
                August 2021
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.0.5 mode:remove_FC converted:17.08.2021

                Health & Social care
                health and social care research,panel meetings,patient and public involvement,positioning theory,types of knowledge,user involvement

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