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      Research Involvement and Engagement: reflections so far and future directions

      editorial
      1 , 2 ,
      Research Involvement and Engagement
      BioMed Central

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          Two years ago we launched Research Involvement and Engagement (RIE) as an interdisciplinary co-produced journal, focusing on patient and wider involvement and engagement in all stages of health and social care research. In this Editorial we reflect on progress and consider future directions. Now indexed in PubMed Central, RIE’s prime objective is to publish papers that report public involvement in enough depth to generate a sound and robust evidence base, from which others can draw to develop best practice. Our open access publishing enables anyone who wants to read a paper to access it free of charge, a powerful way of making research more open and more democratic, with RIE a key part of this slow but necessary revolution. While we have made progress, there is still a long way to go to embed involvement and engagement as normal within research practice. Publishers and funders have a vital role to play in changing research so the co-production of knowledge becomes the norm. In this Editorial we highlight key areas that we need to develop to strengthen involvement and engagement. We draw strength from knowing we are not alone in this journey. Our Editorial Board, our authors, our reviewers, and you dear readers, are all companions on this journey, making a wide range of contributions that help us move forward, slowly but surely.

          Abstract

          Two years ago we launched Research Involvement and Engagement (RIE) as an interdisciplinary co-produced journal, focusing on patient and wider involvement and engagement in all stages of health and social care research. In this Editorial we reflect on progress and consider future directions. Now indexed in PubMed Central, RIE’s prime objective is to publish papers that report public involvement in enough depth to generate a sound and robust evidence base, from which others can draw to develop best practice. Our open access publishing enables anyone who wants to read a paper to access it free of charge, a powerful way of making research more open and more democratic, with RIE a key part of this slow but necessary revolution. While we have made progress, there is still a long way to go to embed involvement and engagement as normal within research practice. Publishers and funders have a vital role to play in changing research so the co-production of knowledge becomes the norm. In this Editorial we highlight key areas that we need to develop to strengthen involvement and engagement. We draw strength from knowing we are not alone in this journey. Our Editorial Board, our authors, our reviewers, and you dear readers, are all companions on this journey, making a wide range of contributions that help us move forward, slowly but surely.

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          Most cited references2

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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 and public engagement in health-related quality of life and patient-reported outcomes research: what is important and why should we care? Findings from the first ISOQOL patient engagement symposium.

            Recent years have witnessed growing international interest in the active involvement, or engagement [patient engagement (PE)], of patients and the public in health services research. However, there is limited evidence of the extent or impact of PE in health-related quality of life (HRQL) and patient-reported outcomes (PRO) research. Therefore, in October 2013, the International Society for Quality of Life research (ISOQOL) hosted its first symposium, which sought to explore the potential for PE in this field.
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              Author and article information

              Contributors
              sophie.staniszewska@warwick.ac.uk
              Journal
              Res Involv Engagem
              Res Involv Engagem
              Research Involvement and Engagement
              BioMed Central (London )
              2056-7529
              8 November 2017
              8 November 2017
              2017
              : 3
              : 24
              Affiliations
              [1 ]Involved and engaged patient and carer, Stevenage, UK
              [2 ]ISNI 0000 0000 8809 1613, GRID grid.7372.1, Warwick Research in Nursing, , University of Warwick Medical School, ; Coventry, UK
              Article
              74
              10.1186/s40900-017-0074-y
              5678799
              29152330
              dd28ebbd-385b-401a-81c3-b3d6e9950a6e
              © The Author(s). 2017

              Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

              History
              : 29 September 2017
              : 29 September 2017
              Categories
              Editorial
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              © The Author(s) 2017

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