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      A framework for involving coproduction partners in research about young people with type 1 diabetes

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          Abstract

          Background

          Involvement of end‐users in research can enhance its quality, relevance, credibility and legitimacy; however, the processes through which these changes occur are unclear. Our aim was to explore a coproduction research team's experiences of their involvement in research about young people with type 1 diabetes mellitus (T1DM).

          Methods

          Semi‐structured interviews conducted with two young people with T1DM, two parents, one diabetes educator, one endocrinologist‐scientist and one research‐engineer explored experiences of coproduction research and its impact on both the research and the participants. Drawing on grounded theory, we undertook inductive analysis and storyline mapping to develop a theorized framework of mechanisms supporting the process of coproduction in T1DM research with young people.

          Findings

          The framework involving coproduction partners in research about young people with type 1 diabetes centres on the unique expertize that different team members bring to the research and describes conditions that enable expert contributions through the enactment of a variety of expert roles. The framework also describes outcomes—the impact of the expert contributions on both the research and the team members involved.

          Conclusion

          The findings of this small exploratory study provide a sound foundation to develop further understanding about structures and processes that are integral for the success of coproduction research teams. The framework may provide a guide for researchers planning to incorporate coproduction, on elements that are important for this model of research to succeed. It may also inform coproduction impact assessment research and be used for hypothesis testing and expansion in future studies.

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          Most cited references47

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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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              Basics of Qualitative Research. Techniques and Procedures for Developing Grounded Theory

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                Author and article information

                Contributors
                Role: Senior Research Fellowjane.desborough@anu.edu.au
                Role: Research Fellow
                Role: Coproduction partner
                Role: Associate 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
                10 December 2021
                February 2022
                : 25
                : 1 ( doiID: 10.1111/hex.v25.1 )
                : 430-442
                Affiliations
                [ 1 ] Department of Health Services, Research and Policy, Research School of Population Health, College of Health and Medicine Australian National University Canberra Australian Capital Territory Australia
                [ 2 ] Australian National University Medical School, College of Health and Medicine Australian National University Canberra Australian Capital Territory Australia
                [ 3 ] Centre for Mental Health Research, Research School of Population Health, College of Health and Medicine Australian National University Canberra Australian Capital Territory Australia
                Author notes
                [*] [* ] Correspondence Jane Desborough, Department of Health Services, Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, 63 Eggleston Road, Canberra, ACT 2601, Australia.

                Email: jane.desborough@ 123456anu.edu.au

                Author information
                http://orcid.org/0000-0003-1406-4593
                http://orcid.org/0000-0001-9053-0707
                http://orcid.org/0000-0002-3024-1687
                http://orcid.org/0000-0001-5602-3664
                Article
                HEX13403
                10.1111/hex.13403
                8849360
                34890473
                20fcccc4-cf0b-4100-8051-bccffed2f743
                © 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
                : 24 June 2021
                : 11 March 2021
                : 14 November 2021
                Page count
                Figures: 1, Tables: 2, Pages: 13, Words: 9154
                Funding
                Funded by: Australian National University , doi 10.13039/501100000995;
                Categories
                Original Article
                Original Articles
                Custom metadata
                2.0
                February 2022
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.1.1 mode:remove_FC converted:16.02.2022

                Health & Social care
                consumer engagement,coproduction,grounded theory,impact,patient and public involvement,patient experience,type 1 diabetes mellitus

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