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      Patient engagement in research related to dementia: A scoping review

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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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            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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              Research priorities to reduce the global burden of dementia by 2025.

              At the First WHO Ministerial Conference on Global Action Against Dementia in March, 2015, 160 delegates, including representatives from 80 WHO Member States and four UN agencies, agreed on a call for action to reduce the global burden of dementia by fostering a collective effort to advance research. To drive this effort, we completed a globally representative research prioritisation exercise using an adapted version of the Child Health and Nutrition Research Initiative method. We elicited 863 research questions from 201 participants and consolidated these questions into 59 thematic research avenues, which were scored anonymously by 162 researchers and stakeholders from 39 countries according to five criteria. Six of the top ten research priorities were focused on prevention, identification, and reduction of dementia risk, and on delivery and quality of care for people with dementia and their carers. Other priorities related to diagnosis, biomarkers, treatment development, basic research into disease mechanisms, and public awareness and understanding of dementia. Research priorities identified by this systematic international process should be mapped onto the global dementia research landscape to identify crucial gaps and inform and motivate policy makers, funders, and researchers to support and conduct research to reduce the global burden of dementia. Efforts are needed by all stakeholders, including WHO, WHO Member States, and civil society, to continuously monitor research investments and progress, through international platforms such as a Global Dementia Observatory. With established research priorities, an opportunity now exists to translate the call for action into a global dementia action plan to reduce the global burden of dementia.
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                Author and article information

                Journal
                Dementia
                Dementia
                SAGE Publications
                1471-3012
                1741-2684
                October 29 2018
                November 2018
                October 29 2018
                November 2018
                : 17
                : 8
                : 944-975
                Affiliations
                [1 ]Toronto Rehabilitation Institute – University Health Network, Toronto, Canada
                [2 ]Oslo Metropolitan University, Oslo, Norway
                [3 ]Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada
                [4 ]Alzheimer’s Society, UK; NIHR Clinical Research Network South London, Guy’s Hospital, London, UK
                [5 ]Ontario Dementia Advisory Group, Southampton, Canada
                [6 ]Ontario Dementia Advisory Group, London, Canada
                [7 ]Geriatric Medicine, Nova Scotia Health Authority / Dalhousie University, Halifax, Canada; Canadian Consortium on Neurodegeneration in Aging
                [8 ]Toronto Rehabilitation Institute – University Health Network, Toronto, Canada; Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada; Canadian Consortium on Neurodegeneration in Aging
                Article
                10.1177/1471301218789292
                30373460
                bf322284-a64c-4450-b63b-b87cde06dfd3
                © 2018

                http://journals.sagepub.com/page/policies/text-and-data-mining-license

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