Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners

Background Patient research partners (PRPs) are people with a disease who collaborate in a research team as partners. The aim of this systematic literature review (SLR) was to assess barriers and facilitators to PRP involvement in rheumatology research. Methods The SLR was conducted in PubMed/Medlin...

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Autores: Aouad, Krystel, De Wit, Maarten, Elhai, Muriel, Benavent, Diego, Bertheussen, Heidi, Zabalan, Condruta, Primdahl, Jette, Studenic, Paul, Gossec, Laure
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2024
País:España
Institución:Universidad de Barcelona
Repositorio:Dipòsit Digital de la UB
OAI Identifier:oai:diposit.ub.edu:2445/219401
Acceso en línea:https://hdl.handle.net/2445/219401
Access Level:acceso abierto
Palabra clave:Reumatologia
Ressenyes sistemàtiques (Investigació mèdica)
Rheumatology
Systematic reviews (Medical research)
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spelling Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners Aouad, Krystel De Wit, Maarten Elhai, Muriel Benavent, Diego Bertheussen, Heidi Zabalan, Condruta Primdahl, Jette Studenic, Paul Gossec, Laure Reumatologia Ressenyes sistemàtiques (Investigació mèdica) Rheumatology Systematic reviews (Medical research) Background Patient research partners (PRPs) are people with a disease who collaborate in a research team as partners. The aim of this systematic literature review (SLR) was to assess barriers and facilitators to PRP involvement in rheumatology research. Methods The SLR was conducted in PubMed/Medline for articles on PRP involvement in rheumatology research, published between 2017 and 2023; websites were also searched in rheumatology and other specialties. Data were extracted regarding the definition of PRPs, their role and added value, as well as barriers and facilitators to PRP involvement. The quality of the articles was assessed. Quantitative data were analysed descriptively, and principles of thematic content analysis was applied to qualitative data. Results Of 1016 publications, 53 articles were included; the majority of these studies were qualitative studies (26%), opinion articles (21%), meeting reports (17%) and mixed-methods studies (11%). Roles of PRPs ranged from research partners to patient advocates, advisors and patient reviewers. PRPs were reported/advised to be involved early in the project (32% of articles) and in all research phases (30%), from the conception stage to the implementation of research findings. The main barriers were challenges in communication and support for both PRPs and researchers. Facilitators of PRP involvement included more than one PRP per project, training of PRPs and researchers, a supportive environment for PRPs (including adequate communication, acknowledgement and compensation of PRPs) and the presence of a PRP coordinator. Conclusion This SLR identified barriers and facilitators to PRP involvement, and was key to updating the European Alliance of Associations for Rheumatology recommendations for PRP-researcher collaboration based on scientific evidence. Elsevier BV https://hdl.handle.net/2445/219401
title Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners
spellingShingle Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners
Aouad, Krystel
Reumatologia
Ressenyes sistemàtiques (Investigació mèdica)
Rheumatology
Systematic reviews (Medical research)
title_short Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners
title_full Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners
title_fullStr Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners
title_full_unstemmed Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners
title_sort Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners
author Aouad, Krystel
author_facet Aouad, Krystel
De Wit, Maarten
Elhai, Muriel
Benavent, Diego
Bertheussen, Heidi
Zabalan, Condruta
Primdahl, Jette
Studenic, Paul
Gossec, Laure
author_role author
author2 De Wit, Maarten
Elhai, Muriel
Benavent, Diego
Bertheussen, Heidi
Zabalan, Condruta
Primdahl, Jette
Studenic, Paul
Gossec, Laure
author2_role author
author
author
author
author
author
author
author
topic Reumatologia
Ressenyes sistemàtiques (Investigació mèdica)
Rheumatology
Systematic reviews (Medical research)
topic_facet Reumatologia
Ressenyes sistemàtiques (Investigació mèdica)
Rheumatology
Systematic reviews (Medical research)
description Background Patient research partners (PRPs) are people with a disease who collaborate in a research team as partners. The aim of this systematic literature review (SLR) was to assess barriers and facilitators to PRP involvement in rheumatology research. Methods The SLR was conducted in PubMed/Medline for articles on PRP involvement in rheumatology research, published between 2017 and 2023; websites were also searched in rheumatology and other specialties. Data were extracted regarding the definition of PRPs, their role and added value, as well as barriers and facilitators to PRP involvement. The quality of the articles was assessed. Quantitative data were analysed descriptively, and principles of thematic content analysis was applied to qualitative data. Results Of 1016 publications, 53 articles were included; the majority of these studies were qualitative studies (26%), opinion articles (21%), meeting reports (17%) and mixed-methods studies (11%). Roles of PRPs ranged from research partners to patient advocates, advisors and patient reviewers. PRPs were reported/advised to be involved early in the project (32% of articles) and in all research phases (30%), from the conception stage to the implementation of research findings. The main barriers were challenges in communication and support for both PRPs and researchers. Facilitators of PRP involvement included more than one PRP per project, training of PRPs and researchers, a supportive environment for PRPs (including adequate communication, acknowledgement and compensation of PRPs) and the presence of a PRP coordinator. Conclusion This SLR identified barriers and facilitators to PRP involvement, and was key to updating the European Alliance of Associations for Rheumatology recommendations for PRP-researcher collaboration based on scientific evidence.
publishDate 2024
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url https://hdl.handle.net/2445/219401
eu_rights_str_mv openAccess
publisher Elsevier BV
institution Universidad de Barcelona
collection Dipòsit Digital de la UB
reponame_str Dipòsit Digital de la UB
instname_str Universidad de Barcelona
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publishDateSort 2024
author_browse Aouad, Krystel
Benavent, Diego
Bertheussen, Heidi
De Wit, Maarten
Elhai, Muriel
Gossec, Laure
Primdahl, Jette
Studenic, Paul
Zabalan, Condruta
publisherStr Elsevier BV
score 6,924472

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