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A Systematic Review of Patient Engagement Experiences in Brain Disorders
BACKGROUND: Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Dove
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9758979/ https://www.ncbi.nlm.nih.gov/pubmed/36536754 http://dx.doi.org/10.2147/PROM.S256396 |
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author | Bertorello, Deborah Brichetto, Giampaolo Folkvord, Frans Theben, Alexandra Zaratin, Paola |
author_facet | Bertorello, Deborah Brichetto, Giampaolo Folkvord, Frans Theben, Alexandra Zaratin, Paola |
author_sort | Bertorello, Deborah |
collection | PubMed |
description | BACKGROUND: Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce. AIM: To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation. METHODS: Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria. RESULTS: In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices. DISCUSSION: Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of “expert patients” in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness. |
format | Online Article Text |
id | pubmed-9758979 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Dove |
record_format | MEDLINE/PubMed |
spelling | pubmed-97589792022-12-18 A Systematic Review of Patient Engagement Experiences in Brain Disorders Bertorello, Deborah Brichetto, Giampaolo Folkvord, Frans Theben, Alexandra Zaratin, Paola Patient Relat Outcome Meas Review BACKGROUND: Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce. AIM: To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation. METHODS: Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria. RESULTS: In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices. DISCUSSION: Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of “expert patients” in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness. Dove 2022-12-13 /pmc/articles/PMC9758979/ /pubmed/36536754 http://dx.doi.org/10.2147/PROM.S256396 Text en © 2022 Bertorello et al. https://creativecommons.org/licenses/by-nc/3.0/This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License (http://creativecommons.org/licenses/by-nc/3.0/ (https://creativecommons.org/licenses/by-nc/3.0/) ). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms (https://www.dovepress.com/terms.php). |
spellingShingle | Review Bertorello, Deborah Brichetto, Giampaolo Folkvord, Frans Theben, Alexandra Zaratin, Paola A Systematic Review of Patient Engagement Experiences in Brain Disorders |
title | A Systematic Review of Patient Engagement Experiences in Brain Disorders |
title_full | A Systematic Review of Patient Engagement Experiences in Brain Disorders |
title_fullStr | A Systematic Review of Patient Engagement Experiences in Brain Disorders |
title_full_unstemmed | A Systematic Review of Patient Engagement Experiences in Brain Disorders |
title_short | A Systematic Review of Patient Engagement Experiences in Brain Disorders |
title_sort | systematic review of patient engagement experiences in brain disorders |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9758979/ https://www.ncbi.nlm.nih.gov/pubmed/36536754 http://dx.doi.org/10.2147/PROM.S256396 |
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