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Patient Engagement in Health Research: Perspectives from Patient Participants

Background and purpose: Over the past decade, patient engagement (PE) has emerged as an important way to help improve the relevance, quality, and impact of health research. However, there is limited consensus on how best to meaningfully engage patients in the research process. The goal of this artic...

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Autores principales: Easley, Julie, Wassersug, Richard, Matthias, Sharon, Tompson, Margaret, Schneider, Nancy D., O’Brien, Mary Ann, Vick, Bonnie, Fitch, Margaret
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10047022/
https://www.ncbi.nlm.nih.gov/pubmed/36975423
http://dx.doi.org/10.3390/curroncol30030210
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author Easley, Julie
Wassersug, Richard
Matthias, Sharon
Tompson, Margaret
Schneider, Nancy D.
O’Brien, Mary Ann
Vick, Bonnie
Fitch, Margaret
author_facet Easley, Julie
Wassersug, Richard
Matthias, Sharon
Tompson, Margaret
Schneider, Nancy D.
O’Brien, Mary Ann
Vick, Bonnie
Fitch, Margaret
author_sort Easley, Julie
collection PubMed
description Background and purpose: Over the past decade, patient engagement (PE) has emerged as an important way to help improve the relevance, quality, and impact of health research. However, there is limited consensus on how best to meaningfully engage patients in the research process. The goal of this article is to share our experiences and insights as members of a Patient Advisory Committee (PAC) on a large, multidisciplinary cancer research study that has spanned six years. We hope by sharing our reflections of the PAC experiences, we can highlight successes, challenges, and lessons learned to help guide PE in future health research. To the best of our knowledge, few publications describing PE experiences in health research teams have been written by patients, survivors, or family caregivers themselves. Methods: A qualitative approach was used to gather reflections from members of the Patient Advisory Committee regarding their experiences in participating in a research study over six years. Each member completed an online survey and engaged in a group discussion based on the emergent themes from the survey responses. Results: Our reflections about experiences as a PAC on a large, pan-Canadian research study include three overarching topics (1) what worked well; (2) areas for improvement; and (3) reflections on our overall contribution and impact. Overall, we found the experience positive and experienced personal satisfaction but there were areas where future improvements could be made. These areas include earlier engagement and training in the research process, more frequent communication between the patient committee and the research team, and on-going monitoring regarding the nature of the patient engagement. Conclusions: Engaging individuals who have experienced the types of events which are the focus of a research study can contribute to the overall relevance of the project. However, intentional efforts are necessary to ensure satisfactory involvement.
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spelling pubmed-100470222023-03-29 Patient Engagement in Health Research: Perspectives from Patient Participants Easley, Julie Wassersug, Richard Matthias, Sharon Tompson, Margaret Schneider, Nancy D. O’Brien, Mary Ann Vick, Bonnie Fitch, Margaret Curr Oncol Article Background and purpose: Over the past decade, patient engagement (PE) has emerged as an important way to help improve the relevance, quality, and impact of health research. However, there is limited consensus on how best to meaningfully engage patients in the research process. The goal of this article is to share our experiences and insights as members of a Patient Advisory Committee (PAC) on a large, multidisciplinary cancer research study that has spanned six years. We hope by sharing our reflections of the PAC experiences, we can highlight successes, challenges, and lessons learned to help guide PE in future health research. To the best of our knowledge, few publications describing PE experiences in health research teams have been written by patients, survivors, or family caregivers themselves. Methods: A qualitative approach was used to gather reflections from members of the Patient Advisory Committee regarding their experiences in participating in a research study over six years. Each member completed an online survey and engaged in a group discussion based on the emergent themes from the survey responses. Results: Our reflections about experiences as a PAC on a large, pan-Canadian research study include three overarching topics (1) what worked well; (2) areas for improvement; and (3) reflections on our overall contribution and impact. Overall, we found the experience positive and experienced personal satisfaction but there were areas where future improvements could be made. These areas include earlier engagement and training in the research process, more frequent communication between the patient committee and the research team, and on-going monitoring regarding the nature of the patient engagement. Conclusions: Engaging individuals who have experienced the types of events which are the focus of a research study can contribute to the overall relevance of the project. However, intentional efforts are necessary to ensure satisfactory involvement. MDPI 2023-02-26 /pmc/articles/PMC10047022/ /pubmed/36975423 http://dx.doi.org/10.3390/curroncol30030210 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Easley, Julie
Wassersug, Richard
Matthias, Sharon
Tompson, Margaret
Schneider, Nancy D.
O’Brien, Mary Ann
Vick, Bonnie
Fitch, Margaret
Patient Engagement in Health Research: Perspectives from Patient Participants
title Patient Engagement in Health Research: Perspectives from Patient Participants
title_full Patient Engagement in Health Research: Perspectives from Patient Participants
title_fullStr Patient Engagement in Health Research: Perspectives from Patient Participants
title_full_unstemmed Patient Engagement in Health Research: Perspectives from Patient Participants
title_short Patient Engagement in Health Research: Perspectives from Patient Participants
title_sort patient engagement in health research: perspectives from patient participants
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10047022/
https://www.ncbi.nlm.nih.gov/pubmed/36975423
http://dx.doi.org/10.3390/curroncol30030210
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