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      Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement).

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          Abstract

          This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group 'Dementia Outcome Measures - Charting New Territory'. Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research.

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          Most cited references 8

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          Principles and indicators of successful consumer involvement in NHS research: results of a Delphi study and subgroup analysis.

          Consumer involvement in NHS research is Department of Health policy within the UK. Despite the existence of policy directives and guidance, until recently there has been no consensus among consumers and researchers about what it means to involve consumers successfully in NHS research. This paper discusses the value of consensus research in this policy area, and presents the detailed findings of a Delphi study carried out to reach consensus on principles and indicators of successful consumer involvement in NHS research. Study participants, comprising consumers, researchers and consumer-researchers, were identified using a purposive sampling strategy. Consensus was reached on eight clear and valid principles of successful consumer involvement in NHS research, with each principle having at least one clear and valid indicator. Subgroup analysis revealed few significant differences in how consumers, researchers and consumer-researchers rated the principles and indicators. The implications and limitations of the study are discussed. Further research is needed to assess: (1) the usefulness of the principles and indicators for differing models of consumer involvement, health research methodologies, and subject areas within health research; and (2) the impact of 'successful' consumer involvement on health research processes and outcomes.
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            Evaluation of public involvement in research: time for a major re-think?

            The way that public involvement in research has been evaluated as a complex intervention has derailed the development of an evidence base. Two alternative approaches are available for constructing and evaluating patient involvement, each of which requires us to revisit the purposes and values that underpin it in each stage of the research process.
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              Involving users in the delivery and evaluation of mental health services: systematic review

               E Simpson (2002)
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                Author and article information

                Journal
                Aging Ment Health
                Aging & mental health
                Informa UK Limited
                1364-6915
                1360-7863
                May 17 2017
                Affiliations
                [1 ] a Alzheimer Europe , Luxembourg , Luxembourg.
                [2 ] b Faculty of Health & Social Care , University of Hull , Hull , United Kingdom.
                [3 ] c School of Dementia Studies , University of Bradford , Bradford , United Kingdom.
                [4 ] d Dipartimento di Psicologia , University of Bologna , Bologna , Italy.
                [5 ] e Danish Dementia Research Centre, Copenhagen University Hospital , University of Copenhagen , Copenhagen , Denmark.
                Article
                10.1080/13607863.2017.1317334
                28513210

                research, PPI, position paper, people with dementia

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