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      Patient and public engagement in research and health system decision making: A systematic review of evaluation tools

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          Abstract

          Background

          Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published.

          Objective

          Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making.

          Methods

          We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject‐matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability.

          Results

          In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public.

          Conclusion

          A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.

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          Most cited references23

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          Evaluating patient and stakeholder engagement in research: moving from theory to practice.

          Despite the growing demand for research that engages stakeholders, there is limited evidence in the literature to demonstrate its value - or return on investment. This gap indicates a general lack of evaluation of engagement activities. To adequately inform engagement activities, we need to further investigate the dividends of engaged research, and how to evaluate these effects. This paper synthesizes the literature on hypothesized impacts of engagement, shares what has been evaluated and identifies steps needed to reduce the gap between engagement's promises and the underlying evidence supporting its practice. This assessment provides explicit guidance for better alignment of engagement's promised benefits with evaluation efforts and identifies specific areas for development of evaluative measures and better reporting processes.
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            The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research.

            The aim of this study was to develop the GRIPP (Guidance for Reporting Involvement of Patients and Public) checklist to enhance the quality of PPI reporting. Thematic analysis was used to synthesize key issues relating to patient and public involvement (PPI) identified in the PIRICOM and PAPIRIS systematic reviews. These issues informed the development of the GRIPP checklist. The key issues identified included limited conceptualization of PPI, poor quality of methods reporting, unclear content validity of studies, poor reporting of context and process, enormous variability in the way impact is reported, little formal evaluation of the quality of involvement, limited focus on negative impacts, and little robust measurement of impact. The GRIPP checklist addresses these key issues. The reporting of patient and public involvement in health research needs significant enhancement. The GRIPP checklist represents the first international attempt to enhance the quality of PPI reporting. Better reporting will strengthen the PPI evidence-base and so enable more effective evaluation of what PPI works, for whom, in what circumstances and why.
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              • Article: not found

              Deliberations about deliberative methods: issues in the design and evaluation of public participation processes.

              A common thread weaving through the current public participation debate is the need for new approaches that emphasize two-way interaction between decision makers and the public as well as deliberation among participants. Increasingly complex decision making processes require a more informed citizenry that has weighed the evidence on the issue, discussed and debated potential decision options and arrived at a mutually agreed upon decision or at least one by which all parties can abide. We explore the recent fascination with deliberative methods for public involvement first by examining their origins within democratic theory, and then by focusing on the experiences with deliberative methods within the health sector. In doing so, we answer the following questions "What are deliberative methods and why have they become so popular? What are their potential contributions to the health sector?" We use this critical review of the literature as the basis for developing general principles that can be used to guide the design and evaluation of public involvement processes for the health-care sector in particular.
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                Author and article information

                Contributors
                antoine.boivin@umontreal.ca
                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
                30 July 2018
                December 2018
                : 21
                : 6 ( doiID: 10.1111/hex.2018.21.issue-6 )
                : 1075-1084
                Affiliations
                [ 1 ] University of Montreal Hospital Research Center (CRCHUM) Montreal QC Canada
                [ 2 ] Department of family medicine University of Montreal Montreal QC Canada
                [ 3 ] Center of Excellence on Partnership with Patients and the Public (CEPPP) Montreal QC Canada
                [ 4 ] Department of health management, evaluation and policy Ecole de santé publique de l'Université de Montréal Montreal QC Canada
                [ 5 ] McMaster Health Forum McMaster University Hamilton ON Canada
                [ 6 ] Direction Collaboration et Partenariat Patient Faculté de Médecine Université de Montréal Montreal QC Canada
                [ 7 ] Participatory Research at McGill Department of Family Medicine McGill University Montreal QC Canada
                [ 8 ] Centre for Health Economics and Policy Analysis (CHEPA) McMaster University Hamilton ON Canada
                Author notes
                [*] [* ] Correspondence

                Antoine Boivin, Center of Excellence in Patient and Public Partnership, University of Montreal Hospital Research Center (CRCHUM), Montreal, QC, Canada.

                Email: antoine.boivin@ 123456umontreal.ca

                Author information
                http://orcid.org/0000-0001-7824-8602
                Article
                HEX12804
                10.1111/hex.12804
                6250878
                30062858
                e4b01b1c-7a21-4c04-a163-d31bb14f37b2
                © 2018 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
                : 21 May 2018
                Page count
                Figures: 1, Tables: 3, Pages: 10, Words: 6521
                Funding
                Funded by: SUPPORT Units (Support for People and Patient‐Oriented Research and Trials) of British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, Québec, Maritime, Newfoundland and Labrador
                Award ID: NA
                Funded by: CIHR Strategy for Patient‐Oriented Research (SPOR)
                Funded by: Canada Research Chair in Patient and Public Partnership
                Categories
                Original Research Paper
                Original Research Papers
                Custom metadata
                2.0
                hex12804
                December 2018
                Converter:WILEY_ML3GV2_TO_NLMPMC version:version=5.5.3 mode:remove_FC converted:23.11.2018

                Health & Social care
                evaluation instruments,patient and public engagement,quality improvement,research,systematic review

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