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The prevalence of patient engagement in published trials: a systematic review

PLAIN ENGLISH SUMMARY: With the growing movement to engage patients in research, questions are being asked about who is engaging patients and how they are being engaged. Internationally, research groups are supporting and funding patient-oriented research studies that engage patients in the identifi...

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Autores principales: Fergusson, Dean, Monfaredi, Zarah, Pussegoda, Kusala, Garritty, Chantelle, Lyddiatt, Anne, Shea, Beverley, Duffett, Lisa, Ghannad, Mona, Montroy, Joshua, Murad, M. Hassan, Pratt, Misty, Rader, Tamara, Shorr, Risa, Yazdi, Fatemeh
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5963039/
https://www.ncbi.nlm.nih.gov/pubmed/29796308
http://dx.doi.org/10.1186/s40900-018-0099-x
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author Fergusson, Dean
Monfaredi, Zarah
Pussegoda, Kusala
Garritty, Chantelle
Lyddiatt, Anne
Shea, Beverley
Duffett, Lisa
Ghannad, Mona
Montroy, Joshua
Murad, M. Hassan
Pratt, Misty
Rader, Tamara
Shorr, Risa
Yazdi, Fatemeh
author_facet Fergusson, Dean
Monfaredi, Zarah
Pussegoda, Kusala
Garritty, Chantelle
Lyddiatt, Anne
Shea, Beverley
Duffett, Lisa
Ghannad, Mona
Montroy, Joshua
Murad, M. Hassan
Pratt, Misty
Rader, Tamara
Shorr, Risa
Yazdi, Fatemeh
author_sort Fergusson, Dean
collection PubMed
description PLAIN ENGLISH SUMMARY: With the growing movement to engage patients in research, questions are being asked about who is engaging patients and how they are being engaged. Internationally, research groups are supporting and funding patient-oriented research studies that engage patients in the identification of research priorities and the design, conduct and uptake of research. As we move forward, we need to know what meaningful patient engagement looks like, how it benefits research and clinical practice, and what are the barriers to patient engagement? We conducted a review of the published literature looking for trials that report engaging patients in the research. We included both randomized controlled trials and non-randomized comparative trials. We looked at these trials for important study characteristics, including how patients were engaged, to better understand the practices used in trials. Importantly, we also discuss the number of trials reporting patient engagement practices relative to all published trials. We found that very few trials report any patient engagement activities even though it is widely supported by many major funding organizations. The findings of our work will advance patient-oriented research by showing how patients can be engaged and by stressing that patient engagement practices need to be better reported. ABSTRACT: BACKGROUND: Patient-Oriented Research (POR) is research informed by patients and is centred on what is of importance to them. A fundamental component of POR is that patients are included as an integral part of the research process from conception to dissemination and implementation, and by extension, across the research continuum from basic research to pragmatic trials [J Comp Eff Res 2012, 1:181–94, JAMA 2012, 307:1587–8]. Since POR’s inception, questions have been raised as to how best to achieve this goal. We conducted a systematic review of randomized controlled trials and non-randomized comparative trials that report engaging patients in their research. Our main goal was to describe the characteristics of published trials engaging patients in research, and to identify the extent of patient engagement activities reported in these trials. METHODS: The MEDLINE®, EMBASE®, Cinahl, PsycINFO, Cochrane Methodology Registry, and Pubmed were searched from May 2011 to June 16th, 2016. Title, abstract and full text screening of all reports were conducted independently by two reviewers. Data were extracted from included trials by one reviewer and verified by a second. All trials that report patient engagement for the purposes of research were included. RESULTS: Of the 9490 citations retrieved, 2777 were reviewed at full text, of which 23 trials were included. Out of the 23 trials, 17 were randomized control trials, and six were non-randomized comparative trials. The majority of these trials (83%, 19/23) originated in the United States and United Kingdom. The trials engaged a range of 2-24 patients/ community representatives per study. Engagement of children and minorities occurred in 13% (3/23) and 26% (6/23) of trials; respectively. Engagement was identified in the development of the research question, the selection of study outcomes, and the dissemination and implementation of results. CONCLUSIONS: The prevalence of patient engagement in patient-oriented interventional research is very poor with 23 trials reporting activities engaging patients. Research dedicated to determining the best practice for meaningful engagement is still needed, but adequate reporting measures also need to be defined. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s40900-018-0099-x) contains supplementary material, which is available to authorized users.
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spelling pubmed-59630392018-05-24 The prevalence of patient engagement in published trials: a systematic review Fergusson, Dean Monfaredi, Zarah Pussegoda, Kusala Garritty, Chantelle Lyddiatt, Anne Shea, Beverley Duffett, Lisa Ghannad, Mona Montroy, Joshua Murad, M. Hassan Pratt, Misty Rader, Tamara Shorr, Risa Yazdi, Fatemeh Res Involv Engagem Research Article PLAIN ENGLISH SUMMARY: With the growing movement to engage patients in research, questions are being asked about who is engaging patients and how they are being engaged. Internationally, research groups are supporting and funding patient-oriented research studies that engage patients in the identification of research priorities and the design, conduct and uptake of research. As we move forward, we need to know what meaningful patient engagement looks like, how it benefits research and clinical practice, and what are the barriers to patient engagement? We conducted a review of the published literature looking for trials that report engaging patients in the research. We included both randomized controlled trials and non-randomized comparative trials. We looked at these trials for important study characteristics, including how patients were engaged, to better understand the practices used in trials. Importantly, we also discuss the number of trials reporting patient engagement practices relative to all published trials. We found that very few trials report any patient engagement activities even though it is widely supported by many major funding organizations. The findings of our work will advance patient-oriented research by showing how patients can be engaged and by stressing that patient engagement practices need to be better reported. ABSTRACT: BACKGROUND: Patient-Oriented Research (POR) is research informed by patients and is centred on what is of importance to them. A fundamental component of POR is that patients are included as an integral part of the research process from conception to dissemination and implementation, and by extension, across the research continuum from basic research to pragmatic trials [J Comp Eff Res 2012, 1:181–94, JAMA 2012, 307:1587–8]. Since POR’s inception, questions have been raised as to how best to achieve this goal. We conducted a systematic review of randomized controlled trials and non-randomized comparative trials that report engaging patients in their research. Our main goal was to describe the characteristics of published trials engaging patients in research, and to identify the extent of patient engagement activities reported in these trials. METHODS: The MEDLINE®, EMBASE®, Cinahl, PsycINFO, Cochrane Methodology Registry, and Pubmed were searched from May 2011 to June 16th, 2016. Title, abstract and full text screening of all reports were conducted independently by two reviewers. Data were extracted from included trials by one reviewer and verified by a second. All trials that report patient engagement for the purposes of research were included. RESULTS: Of the 9490 citations retrieved, 2777 were reviewed at full text, of which 23 trials were included. Out of the 23 trials, 17 were randomized control trials, and six were non-randomized comparative trials. The majority of these trials (83%, 19/23) originated in the United States and United Kingdom. The trials engaged a range of 2-24 patients/ community representatives per study. Engagement of children and minorities occurred in 13% (3/23) and 26% (6/23) of trials; respectively. Engagement was identified in the development of the research question, the selection of study outcomes, and the dissemination and implementation of results. CONCLUSIONS: The prevalence of patient engagement in patient-oriented interventional research is very poor with 23 trials reporting activities engaging patients. Research dedicated to determining the best practice for meaningful engagement is still needed, but adequate reporting measures also need to be defined. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s40900-018-0099-x) contains supplementary material, which is available to authorized users. BioMed Central 2018-05-22 /pmc/articles/PMC5963039/ /pubmed/29796308 http://dx.doi.org/10.1186/s40900-018-0099-x Text en © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. 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.
spellingShingle Research Article
Fergusson, Dean
Monfaredi, Zarah
Pussegoda, Kusala
Garritty, Chantelle
Lyddiatt, Anne
Shea, Beverley
Duffett, Lisa
Ghannad, Mona
Montroy, Joshua
Murad, M. Hassan
Pratt, Misty
Rader, Tamara
Shorr, Risa
Yazdi, Fatemeh
The prevalence of patient engagement in published trials: a systematic review
title The prevalence of patient engagement in published trials: a systematic review
title_full The prevalence of patient engagement in published trials: a systematic review
title_fullStr The prevalence of patient engagement in published trials: a systematic review
title_full_unstemmed The prevalence of patient engagement in published trials: a systematic review
title_short The prevalence of patient engagement in published trials: a systematic review
title_sort prevalence of patient engagement in published trials: a systematic review
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5963039/
https://www.ncbi.nlm.nih.gov/pubmed/29796308
http://dx.doi.org/10.1186/s40900-018-0099-x
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