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Involving research participants in a pan-European research initiative: the EPAD participant panel experience
BACKGROUND: Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studie...
Autores principales: | , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7566117/ https://www.ncbi.nlm.nih.gov/pubmed/33088590 http://dx.doi.org/10.1186/s40900-020-00236-z |
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author | Gregory, S. Bunnik, E. M. Callado, A. B. Carrie, I. De Boer, C. Duffus, J. Fauria, K. Forster, S. Gove, D. Knezevic, I. Laquidain, A. Pennetier, D. Saunders, S. Sparks, S. Rice, J. Ritchie, C. W. Milne, R. |
author_facet | Gregory, S. Bunnik, E. M. Callado, A. B. Carrie, I. De Boer, C. Duffus, J. Fauria, K. Forster, S. Gove, D. Knezevic, I. Laquidain, A. Pennetier, D. Saunders, S. Sparks, S. Rice, J. Ritchie, C. W. Milne, R. |
author_sort | Gregory, S. |
collection | PubMed |
description | BACKGROUND: Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activities. Further, there is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts. METHODS: In this paper we describe the set-up, running and experiences of the EPAD participant panel. The EPAD study was a pan-European cohort study with the aim to understand risks for developing Alzheimer’s disease and build a readiness cohort for Phase 2 clinical trials. Due to the longitudinal nature of this study, combined with the enrolment of healthy volunteers and those with mild cognitive impairments, the EPAD team highlighted participant involvement as crucial to the success of this project. The EPAD project employed a nested model, with local panels meeting in England, France, Scotland, Spain and The Netherlands, and feeding into a central study panel. The local panels were governed by terms of reference which were adaptable to local needs. RESULTS: The impact of the panels has been widespread, and varies from feedback on documentation, to supporting with design of media materials and representation of the project at national and international meetings. CONCLUSIONS: The EPAD panels have contributed to the success of the project and the model established is easily transferable to other disease areas investigating healthy or at-risk populations. |
format | Online Article Text |
id | pubmed-7566117 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-75661172020-10-20 Involving research participants in a pan-European research initiative: the EPAD participant panel experience Gregory, S. Bunnik, E. M. Callado, A. B. Carrie, I. De Boer, C. Duffus, J. Fauria, K. Forster, S. Gove, D. Knezevic, I. Laquidain, A. Pennetier, D. Saunders, S. Sparks, S. Rice, J. Ritchie, C. W. Milne, R. Res Involv Engagem Research Article BACKGROUND: Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activities. Further, there is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts. METHODS: In this paper we describe the set-up, running and experiences of the EPAD participant panel. The EPAD study was a pan-European cohort study with the aim to understand risks for developing Alzheimer’s disease and build a readiness cohort for Phase 2 clinical trials. Due to the longitudinal nature of this study, combined with the enrolment of healthy volunteers and those with mild cognitive impairments, the EPAD team highlighted participant involvement as crucial to the success of this project. The EPAD project employed a nested model, with local panels meeting in England, France, Scotland, Spain and The Netherlands, and feeding into a central study panel. The local panels were governed by terms of reference which were adaptable to local needs. RESULTS: The impact of the panels has been widespread, and varies from feedback on documentation, to supporting with design of media materials and representation of the project at national and international meetings. CONCLUSIONS: The EPAD panels have contributed to the success of the project and the model established is easily transferable to other disease areas investigating healthy or at-risk populations. BioMed Central 2020-10-15 /pmc/articles/PMC7566117/ /pubmed/33088590 http://dx.doi.org/10.1186/s40900-020-00236-z Text en © The Author(s) 2020 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Article Gregory, S. Bunnik, E. M. Callado, A. B. Carrie, I. De Boer, C. Duffus, J. Fauria, K. Forster, S. Gove, D. Knezevic, I. Laquidain, A. Pennetier, D. Saunders, S. Sparks, S. Rice, J. Ritchie, C. W. Milne, R. Involving research participants in a pan-European research initiative: the EPAD participant panel experience |
title | Involving research participants in a pan-European research initiative: the EPAD participant panel experience |
title_full | Involving research participants in a pan-European research initiative: the EPAD participant panel experience |
title_fullStr | Involving research participants in a pan-European research initiative: the EPAD participant panel experience |
title_full_unstemmed | Involving research participants in a pan-European research initiative: the EPAD participant panel experience |
title_short | Involving research participants in a pan-European research initiative: the EPAD participant panel experience |
title_sort | involving research participants in a pan-european research initiative: the epad participant panel experience |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7566117/ https://www.ncbi.nlm.nih.gov/pubmed/33088590 http://dx.doi.org/10.1186/s40900-020-00236-z |
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