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Keeping track of and recognizing the value of Public Involvement work in dementia research

The Public Involvement (PI) of people with dementia is slowly but progressively moving from a “nice to have” to a “must have” element of good-quality dementia research. Research funders and ethics committees increasingly ask for evidence of the planning of such involvement. The actual conduct and ou...

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Autores principales: Georges, Jean, Diaz-Ponce, Ana, Lamirel, Daphne, Moradi-Bachiller, Soraya, Gove, Dianne
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9691954/
https://www.ncbi.nlm.nih.gov/pubmed/36438974
http://dx.doi.org/10.3389/fneur.2022.1031831
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author Georges, Jean
Diaz-Ponce, Ana
Lamirel, Daphne
Moradi-Bachiller, Soraya
Gove, Dianne
author_facet Georges, Jean
Diaz-Ponce, Ana
Lamirel, Daphne
Moradi-Bachiller, Soraya
Gove, Dianne
author_sort Georges, Jean
collection PubMed
description The Public Involvement (PI) of people with dementia is slowly but progressively moving from a “nice to have” to a “must have” element of good-quality dementia research. Research funders and ethics committees increasingly ask for evidence of the planning of such involvement. The actual conduct and outcome of PI are, however, unfortunately typically under or inadequately reported. In this article, we provide an overview of what PI is and why it is important to dementia research and Alzheimer Europe's approach to PI. We draw on our recent experience of compiling a set of examples of PI in different European projects in publicly available sources. This highlighted the difficulty of finding information about PI activities and the almost total lack of details of such activities in formal reports, official records, and/or public project websites. In this article, we emphasize gaps and call for more stringent conditions for the inclusion and reporting of PI work in the context of the approval and funding of dementia research projects. We call for the establishment of obligatory reporting on the nature, specific challenges, and impact of PI in dementia research in formal reports (e.g., to funders), in public project websites, and in peer-reviewed articles. Such reporting should cover several key factors such as who was involved, how they were involved, and what impact PI had on the research process.
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spelling pubmed-96919542022-11-26 Keeping track of and recognizing the value of Public Involvement work in dementia research Georges, Jean Diaz-Ponce, Ana Lamirel, Daphne Moradi-Bachiller, Soraya Gove, Dianne Front Neurol Neurology The Public Involvement (PI) of people with dementia is slowly but progressively moving from a “nice to have” to a “must have” element of good-quality dementia research. Research funders and ethics committees increasingly ask for evidence of the planning of such involvement. The actual conduct and outcome of PI are, however, unfortunately typically under or inadequately reported. In this article, we provide an overview of what PI is and why it is important to dementia research and Alzheimer Europe's approach to PI. We draw on our recent experience of compiling a set of examples of PI in different European projects in publicly available sources. This highlighted the difficulty of finding information about PI activities and the almost total lack of details of such activities in formal reports, official records, and/or public project websites. In this article, we emphasize gaps and call for more stringent conditions for the inclusion and reporting of PI work in the context of the approval and funding of dementia research projects. We call for the establishment of obligatory reporting on the nature, specific challenges, and impact of PI in dementia research in formal reports (e.g., to funders), in public project websites, and in peer-reviewed articles. Such reporting should cover several key factors such as who was involved, how they were involved, and what impact PI had on the research process. Frontiers Media S.A. 2022-11-11 /pmc/articles/PMC9691954/ /pubmed/36438974 http://dx.doi.org/10.3389/fneur.2022.1031831 Text en Copyright © 2022 Georges, Diaz-Ponce, Lamirel, Moradi-Bachiller and Gove. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Neurology
Georges, Jean
Diaz-Ponce, Ana
Lamirel, Daphne
Moradi-Bachiller, Soraya
Gove, Dianne
Keeping track of and recognizing the value of Public Involvement work in dementia research
title Keeping track of and recognizing the value of Public Involvement work in dementia research
title_full Keeping track of and recognizing the value of Public Involvement work in dementia research
title_fullStr Keeping track of and recognizing the value of Public Involvement work in dementia research
title_full_unstemmed Keeping track of and recognizing the value of Public Involvement work in dementia research
title_short Keeping track of and recognizing the value of Public Involvement work in dementia research
title_sort keeping track of and recognizing the value of public involvement work in dementia research
topic Neurology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9691954/
https://www.ncbi.nlm.nih.gov/pubmed/36438974
http://dx.doi.org/10.3389/fneur.2022.1031831
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