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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...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2023
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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. |
format | Online Article Text |
id | pubmed-10047022 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
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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