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Public and patient involvement in dementia research: Time to reflect?

Charlesworth, G; (2018) Public and patient involvement in dementia research: Time to reflect? Dementia , 17 (8) pp. 1064-1067. 10.1177/2397172X18802501. Green open access

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Abstract

Public and patient involvement in research is a well-established requirement for applications to many grant-awarding bodies. Numerous models of consultation, collaboration and leadership have been developed to support all stages of research, from ideas development through to project execution and dissemination of findings. However, the interface between researchers and lay members is not always a happy one; scientific 'fact' may not square with lived experience; clinical researchers may regard their accumulated knowledge from working with many people with dementia and their families as 'more valid' than the individual experience(s) of a small number of public and patient involvement representatives; public and patient involvement members can fall victim to tokenism and manipulation. In this opinion piece, I consider the nature of representation in public and patient involvement in dementia research, and whether identifying disconfirmatory cases provides greater value than current consensus building approaches. I conclude by encouraging researchers to listen, reflect and embrace the opportunity to engage with alternative perspectives.

Type: Article
Title: Public and patient involvement in dementia research: Time to reflect?
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/2397172X18802501
Publisher version: https://doi.org/10.1177%2F2397172X18802501
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: PPI, dementia, public and patient involvement, research
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology
URI: https://discovery.ucl.ac.uk/id/eprint/10060696
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