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Patient and public involvement in research: a review of practical resources for young investigators

Patient and public involvement (PPI) in every aspect of research will add valuable insights from patients’ experiences, help to explore barriers and facilitators to their compliance/adherence to assessment and treatment methods, bring meaningful outcomes that could meet their expectations, needs and...

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Autores principales: Arumugam, Ashokan, Phillips, Lawrence Rick, Moore, Ann, Kumaran, Senthil D., Sampath, Kesava Kovanur, Migliorini, Filippo, Maffulli, Nicola, Ranganadhababu, Bathri Narayanan, Hegazy, Fatma, Botto-van Bemden, Angie
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9996937/
https://www.ncbi.nlm.nih.gov/pubmed/36895053
http://dx.doi.org/10.1186/s41927-023-00327-w
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author Arumugam, Ashokan
Phillips, Lawrence Rick
Moore, Ann
Kumaran, Senthil D.
Sampath, Kesava Kovanur
Migliorini, Filippo
Maffulli, Nicola
Ranganadhababu, Bathri Narayanan
Hegazy, Fatma
Botto-van Bemden, Angie
author_facet Arumugam, Ashokan
Phillips, Lawrence Rick
Moore, Ann
Kumaran, Senthil D.
Sampath, Kesava Kovanur
Migliorini, Filippo
Maffulli, Nicola
Ranganadhababu, Bathri Narayanan
Hegazy, Fatma
Botto-van Bemden, Angie
author_sort Arumugam, Ashokan
collection PubMed
description Patient and public involvement (PPI) in every aspect of research will add valuable insights from patients’ experiences, help to explore barriers and facilitators to their compliance/adherence to assessment and treatment methods, bring meaningful outcomes that could meet their expectations, needs and preferences, reduce health care costs, and improve dissemination of research findings. It is essential to ensure competence of the research team by capacity building with available resources on PPI. This review summarizes practical resources for PPI in various stages of research projects—conception, co-creation, design (including qualitative or mixed methods), execution, implementation, feedback, authorship, acknowledgement and remuneration of patient research partners, and dissemination and communication of research findings with PPI. We have briefly summarized the recommendations and checklists, amongst others, for PPI in rheumatic and musculoskeletal research (e.g. the European Alliance of Associations for Rheumatology (EULAR) recommendations, the Core Outcome Measures in Effectiveness Trials (COMET) checklist and the Guidance for Reporting Involvement of Patients and the Public (GRIPP) checklist). Various tools that could be used to facilitate participation, communication and co-creation of research projects with PPI are highlighted in the review. We shed light on the opportunities and challenges for young investigators involving PPI in their research projects, and have summarized various resources that could be used to enhance PPI in various phases/aspects of research. A summary of web links to various tools and resources for PPI in various stages of research is provided in Additional file 1. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41927-023-00327-w.
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spelling pubmed-99969372023-03-10 Patient and public involvement in research: a review of practical resources for young investigators Arumugam, Ashokan Phillips, Lawrence Rick Moore, Ann Kumaran, Senthil D. Sampath, Kesava Kovanur Migliorini, Filippo Maffulli, Nicola Ranganadhababu, Bathri Narayanan Hegazy, Fatma Botto-van Bemden, Angie BMC Rheumatol Review Patient and public involvement (PPI) in every aspect of research will add valuable insights from patients’ experiences, help to explore barriers and facilitators to their compliance/adherence to assessment and treatment methods, bring meaningful outcomes that could meet their expectations, needs and preferences, reduce health care costs, and improve dissemination of research findings. It is essential to ensure competence of the research team by capacity building with available resources on PPI. This review summarizes practical resources for PPI in various stages of research projects—conception, co-creation, design (including qualitative or mixed methods), execution, implementation, feedback, authorship, acknowledgement and remuneration of patient research partners, and dissemination and communication of research findings with PPI. We have briefly summarized the recommendations and checklists, amongst others, for PPI in rheumatic and musculoskeletal research (e.g. the European Alliance of Associations for Rheumatology (EULAR) recommendations, the Core Outcome Measures in Effectiveness Trials (COMET) checklist and the Guidance for Reporting Involvement of Patients and the Public (GRIPP) checklist). Various tools that could be used to facilitate participation, communication and co-creation of research projects with PPI are highlighted in the review. We shed light on the opportunities and challenges for young investigators involving PPI in their research projects, and have summarized various resources that could be used to enhance PPI in various phases/aspects of research. A summary of web links to various tools and resources for PPI in various stages of research is provided in Additional file 1. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41927-023-00327-w. BioMed Central 2023-03-09 /pmc/articles/PMC9996937/ /pubmed/36895053 http://dx.doi.org/10.1186/s41927-023-00327-w Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/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/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://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 Review
Arumugam, Ashokan
Phillips, Lawrence Rick
Moore, Ann
Kumaran, Senthil D.
Sampath, Kesava Kovanur
Migliorini, Filippo
Maffulli, Nicola
Ranganadhababu, Bathri Narayanan
Hegazy, Fatma
Botto-van Bemden, Angie
Patient and public involvement in research: a review of practical resources for young investigators
title Patient and public involvement in research: a review of practical resources for young investigators
title_full Patient and public involvement in research: a review of practical resources for young investigators
title_fullStr Patient and public involvement in research: a review of practical resources for young investigators
title_full_unstemmed Patient and public involvement in research: a review of practical resources for young investigators
title_short Patient and public involvement in research: a review of practical resources for young investigators
title_sort patient and public involvement in research: a review of practical resources for young investigators
topic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9996937/
https://www.ncbi.nlm.nih.gov/pubmed/36895053
http://dx.doi.org/10.1186/s41927-023-00327-w
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