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      Coming from two different worlds—A qualitative, exploratory study of the collaboration between patient representatives and researchers

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          Abstract

          Background

          Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective.

          Objective

          By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group.

          Design

          We apply a qualitative design using positioning theory as a theoretical framework.

          Setting and participants

          Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis.

          Findings

          The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs.

          Discussion and conclusion

          Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research.

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          Most cited references17

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          Community engagement in research: frameworks for education and peer review.

          Community engagement in research may enhance a community's ability to address its own health needs and health disparities issues while ensuring that researchers understand community priorities. However, there are researchers with limited understanding of and experience with effective methods of engaging communities. Furthermore, limited guidance is available for peer-review panels on evaluating proposals for research that engages communities. The National Institutes of Health Director's Council of Public Representatives developed a community engagement framework that includes values, strategies to operationalize each value, and potential outcomes of their use, as well as a peer-review framework for evaluating research that engages communities. Use of these frameworks for educating researchers to create and sustain authentic community-academic partnerships will increase accountability and equality between the partners.
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            Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned

            BACKGROUND Patients and healthcare stakeholders are increasingly becoming engaged in the planning and conduct of biomedical research. However, limited research characterizes this process or its impact. OBJECTIVE We aimed to characterize patient and stakeholder engagement in the 50 Pilot Projects funded by the Patient-Centered Outcomes Research Institute (PCORI), and identify early contributions and lessons learned. DESIGN A self-report instrument was completed by researchers between 6 and 12 months following project initiation. PARTICIPANTS Forty-seven principal investigators or their designees (94 % response rate) participated in the study. MAIN MEASURES Self-report of types of stakeholders engaged, stages and levels of engagement, facilitators and barriers to engagement, lessons learned, and contributions from engagement were measured. KEY RESULTS Most (83 %) reported engaging more than one stakeholder in their project. Among those, the most commonly reported groups were patients (90 %), clinicians (87 %), health system representatives (44 %), caregivers (41 %), and advocacy organizations (41 %). Stakeholders were commonly involved in topic solicitation, question development, study design, and data collection. Many projects engaged stakeholders in data analysis, results interpretation, and dissemination. Commonly reported contributions included changes to project methods, outcomes or goals; improvement of measurement tools; and interpretation of qualitative data. Investigators often identified communication and shared leadership strategies as “critically important” facilitators (53 and 44 % respectively); lack of stakeholder time was the most commonly reported challenge (46 %). Most challenges were only partially resolved. Early lessons learned included the importance of continuous and genuine partnerships, strategic selection of stakeholders, and accommodation of stakeholders’ practical needs. CONCLUSIONS PCORI Pilot Projects investigators report engaging a variety of stakeholders across many stages of research, with specific changes to their research attributed to engagement. This study identifies early lessons and barriers that should be addressed to facilitate engagement. While this research suggests potential impact of stakeholder engagement, systematic characterization and evaluation of engagement at multiple stages of research is needed to build the evidence base. Electronic supplementary material The online version of this article (doi:10.1007/s11606-015-3450-z) contains supplementary material, which is available to authorized users.
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              Consumer involvement in health research: a review and research agenda.

              The involvement of consumers in health research is now Department of Health policy within the UK. Despite the existence of policy directives, there is a dearth of knowledge on the effects of such involvement. This paper critically reviews the state of our knowledge on this issue, and maps out a research agenda with the aim of stimulating systematic, empirical inquiry into consumer involvement in health research. The paper discusses definitions of 'the consumer'; considers why consumer involvement is believed to be important to health research; traces the development of the policy; analyses the epistemological and methodological implications of the policy; discusses the various levels of consumer involvement in research; and outlines the objections to the policy that have been put forward by clinicians and researchers. Four questions were identified during the review as being in need of theoretical and empirical attention: (1) how can consumer involvement in health research be further conceptualised? (2) how and why does consumer involvement influence health research? (3) how can the influence of consumers in health research be measured and evaluated? and (4) what factors are associated with 'successful' consumer involvement in health research?
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                Author and article information

                Contributors
                Role: PhD Candidatesusanne.stuhlfauth@medisin.uio.no
                Role: PhD 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
                18 February 2019
                June 2019
                : 22
                : 3 ( doiID: 10.1111/hex.2019.22.issue-3 )
                : 496-503
                Affiliations
                [ 1 ] Department of Nursing Science, Faculty of Medicine University of Oslo Oslo Norway
                [ 2 ] Department of Nursing and Health Promotion Faculty of Health Science, Oslo Metropolitan University Kjeller Norway
                Author notes
                [*] [* ] Correspondence

                Susanne Stuhlfauth, Department of Nursing Science, Faculty of Medicine, University of Oslo, Oslo, Norway.

                Email: susanne.stuhlfauth@ 123456medisin.uio.no

                Author information
                https://orcid.org/0000-0001-7469-586X
                Article
                HEX12875
                10.1111/hex.12875
                6543145
                30779324
                4be9df37-38d3-47ef-aa9d-d45cc863a12d
                © 2019 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
                : 29 May 2018
                : 11 January 2019
                : 28 January 2019
                Page count
                Figures: 0, Tables: 0, Pages: 8, Words: 6455
                Categories
                Original Research Paper
                Original Research Papers
                Custom metadata
                2.0
                hex12875
                June 2019
                Converter:WILEY_ML3GV2_TO_NLMPMC version:5.6.4 mode:remove_FC converted:31.05.2019

                Health & Social care
                collaboration,community participation,constructivism,discourse,focus group,interprofessional relation,positioning theory,research personnel,user involvement in research

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