Etchegary Holly, Linklater Stefanie, Duquette D 'Arcy, Wilkinson Gloria, Francis Vanessa, Gionet Erin, Patey Andrea M, Grimshaw Jeremy M
Clinical Epidemiology Program, Faculty of Medicine, Patient Engagement Lead, NL SUPPORT, CIHR-SPOR, Craig L. Dobbin Centre for Genetics, Memorial University, 300 Price Phillip Parkway, Rm 4M210, St. John's, NL, A1B 3V6, Canada.
Department of Medicine, Centre for Implementation Research, Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Canada.
Res Involv Engagem. 2023 Aug 26;9(1):70. doi: 10.1186/s40900-023-00483-w.
The evaluation of patient engagement in research is understudied and under-reported, making it difficult to know what engagement strategies work best and when. We provide the results of an evaluation of patient engagement in a large Canadian research program focused on the de-implementation of low-value care. We aimed to evaluate the experience and impact of patient engagement in the study.
An online cross-sectional survey was administered using Microsoft Forms to (1) researchers and study staff and (2) patient partners. The survey was developed following iterative reviews by the project's patient partnership council and evaluation committee. Survey content areas included opinions on patient engagement to date, including challenges to engagement and suggestions for improvement. Patient partners also evaluated the partnership council. Descriptive statistics including counts and percentages described Likert scale survey items, while open comments were analyzed using descriptive content analysis.
The survey response rate was 46% (17/37). There were positive attitudes about the value of patient engagement in this project. There was also a high degree of willingness to be involved with patient engagement in future projects, whether as a patient partner or as a researcher including patients on the research team. Most patient partners felt their contributions to the project were valued by researchers and study research staff. Open comments revealed that a co-design approach and full inclusion on the research team were integral to demonstrating the value of patient partner input. Areas for improvement included more frequent and ongoing communication among all team members, as well as earlier training about patient engagement, particularly addressing role expectations and role clarity.
Our data revealed that despite some challenges, team members recognized the value of patient engagement in research and agreed project decisions had been impacted by patient partner input. Ongoing communication was highlighted as an area for improvement, as well as earlier training and ongoing support for all team members, but particularly researchers and study staff. In response to evaluation data, the team has reinstated a quarterly newsletter and plans to use specific patient engagement planning templates across study sites for all project activities. These tools should help make expectations clear for all team members and contribute to a positive patient engagement experience. Findings can inform patient engagement planning and evaluation for other health research projects.
对患者参与研究的评估研究不足且报道较少，这使得很难知晓哪种参与策略效果最佳以及何时效果最佳。我们提供了一项对加拿大一个大型研究项目中患者参与情况的评估结果，该项目专注于减少低价值医疗服务。我们旨在评估患者参与该研究的体验和影响。
使用微软表单进行了一项在线横断面调查，调查对象为(1)研究人员和研究工作人员以及(2)患者合作伙伴。该调查是在项目的患者合作委员会和评估委员会进行多次迭代审查后制定的。调查内容领域包括对迄今为止患者参与情况的看法，包括参与的挑战和改进建议。患者合作伙伴还对合作委员会进行了评估。描述性统计（包括计数和百分比）用于描述李克特量表调查项目，而开放性评论则使用描述性内容分析进行分析。
调查回复率为46%（17/37）。对于患者参与本项目的价值，大家持积极态度。对于未来项目，无论是作为患者合作伙伴还是作为将患者纳入研究团队的研究人员，参与患者参与活动的意愿也很高。大多数患者合作伙伴认为他们对项目的贡献得到了研究人员和研究工作人员的重视。开放性评论显示，共同设计方法和在研究团队中的充分融入对于证明患者合作伙伴意见的价值至关重要。改进领域包括所有团队成员之间更频繁和持续的沟通，以及更早地开展关于患者参与的培训，特别是明确角色期望和角色清晰度。
我们的数据显示，尽管存在一些挑战，但团队成员认识到患者参与研究的价值，并认同患者合作伙伴的意见对项目决策产生了影响。持续沟通被强调为一个需要改进的领域，同时也需要为所有团队成员，特别是研究人员和研究工作人员提供更早的培训和持续支持。针对评估数据，该团队已恢复每季度发布时事通讯，并计划在所有研究地点为所有项目活动使用特定的患者参与计划模板。这些工具应有助于让所有团队成员明确期望，并有助于营造积极的患者参与体验。研究结果可为其他健康研究项目的患者参与计划和评估提供参考。
