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...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
MDPI AG
2023-02-01
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| Series: | Current Oncology |
| Subjects: | |
| Online Access: | https://www.mdpi.com/1718-7729/30/3/210 |
| _version_ | 1797612500242399232 |
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| author | Julie Easley Richard Wassersug Sharon Matthias Margaret Tompson Nancy D. Schneider Mary Ann O’Brien Bonnie Vick Margaret Fitch |
| author_facet | Julie Easley Richard Wassersug Sharon Matthias Margaret Tompson Nancy D. Schneider Mary Ann O’Brien Bonnie Vick Margaret Fitch |
| author_sort | Julie Easley |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-03-11T06:42:06Z |
| format | Article |
| id | doaj.art-b225a2dbe2d64e06a1f4648ebdf83d5f |
| institution | Directory Open Access Journal |
| issn | 1198-0052 1718-7729 |
| language | English |
| last_indexed | 2024-03-11T06:42:06Z |
| publishDate | 2023-02-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Current Oncology |
| spelling | doaj.art-b225a2dbe2d64e06a1f4648ebdf83d5f2023-11-17T10:30:46ZengMDPI AGCurrent Oncology1198-00521718-77292023-02-013032770278010.3390/curroncol30030210Patient Engagement in Health Research: Perspectives from Patient ParticipantsJulie Easley0Richard Wassersug1Sharon Matthias2Margaret Tompson3Nancy D. Schneider4Mary Ann O’Brien5Bonnie Vick6Margaret Fitch7Department of Medical Education, Horizon Health Network, Dr. Everett Chalmers Regional Hospital, 700 Priestman Street, Fredericton, NB E3B 5N5, CanadaDepartment of Cellular & Physiological Sciences, University of British Columbia, Vancouver, BC V6T 1Z3, CanadaMatthias Inc.: Connecting for Innovation and Advancing Societies, Edmonton, AB T5K 1S5, CanadaIndependent Researcher, Saskatoon, SK S7H 0A1, CanadaSt. Walburg Town Hall, St. Walburg, SK S0M 2T0, CanadaDepartment of Family and Community Medicine, Temerty Faculty of Medicine, University of Toronto, Toronto, ON M5G 1V7, CanadaIndependent Researcher, St. Walburg, SK S0M 2T0, CanadaBloomberg Faculty of Nursing, University of Toronto, Toronto, ON M5T 1P8, CanadaBackground 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.https://www.mdpi.com/1718-7729/30/3/210patient participationcommunity-based participatory research |
| spellingShingle | Julie Easley Richard Wassersug Sharon Matthias Margaret Tompson Nancy D. Schneider Mary Ann O’Brien Bonnie Vick Margaret Fitch Patient Engagement in Health Research: Perspectives from Patient Participants Current Oncology patient participation community-based participatory research |
| 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 | patient participation community-based participatory research |
| url | https://www.mdpi.com/1718-7729/30/3/210 |
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