Patient Engagement in Health Research: Perspectives from Patient Participants

被引:6
|
作者
Easley, Julie [1 ]
Wassersug, Richard [2 ]
Matthias, Sharon [3 ]
Tompson, Margaret
Schneider, Nancy D. [4 ]
O'Brien, Mary Ann [5 ]
Vick, Bonnie
Fitch, Margaret [6 ]
机构
[1] Dr Everett Chalmers Reg Hosp, Dept Med Educ, Horizon Hlth Network, 700 Priestman St, Fredericton, NB E3B 5N5, Canada
[2] Univ British Columbia, Dept Cellular & Physiol Sci, Vancouver, BC V6T 1Z3, Canada
[3] Matthias Inc Connecting Innovat & Adv Soc, Edmonton, AB T5K 1S5, Canada
[4] St Walburg Town Hall, St Walburg, SK S0M 2T0, Canada
[5] Univ Toronto, Temerty Fac Med, Dept Family & Community Med, Toronto, ON M5G 1V7, Canada
[6] Univ Toronto, Bloomberg Fac Nursing, Toronto, ON M5T 1P8, Canada
基金
加拿大健康研究院;
关键词
patient participation; community-based participatory research; CANADIAN-TEAM; CANCER-CARE;
D O I
10.3390/curroncol30030210
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
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.
引用
收藏
页码:2770 / 2780
页数:11
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