Department of Family Medicine, McGill University, Montreal, Quebec, Canada.
Research Institute of the McGill University Health Centre (MUHC), Montreal, Quebec, Canada.
Health Expect. 2019 Apr;22(2):209-225. doi: 10.1111/hex.12845. Epub 2018 Oct 29.
Patient engagement (PE), patients' meaningful involvement in research through partnerships and sensitivity to their expertise, is receiving attention. However, PE initiatives are poorly reported and little is known about patients' perspective on PE.
To document and evaluate the first phase (22 months) of a PE Project for the I-Score Study which is developing a patient-reported measure of HIV treatment adherence barriers, we describe the nature of PE conducted, determine the level of PE achieved and present its impacts from the engaged patients' perspective.
A Montreal-based committee of ten people with HIV was recruited from community and clinical settings and participated in: I-Score study decision making, knowledge dissemination, research on the experience of people with HIV and the PE project's evaluation.
The evaluation followed a convergent parallel mixed-methods design. Data collection included participant observation, a satisfaction survey and meeting minutes/transcriptions. Analysis entailed reporting PE activities, generating descriptive statistics and thematically analysing qualitative material.
PE consisted of twelve meetings, including two focus groups (needs assessment), in addition to four knowledge dissemination activities. PE levels showed an increase: the first four regular meetings entailed information/consultation, while subsequent meetings reached implication/collaboration. Regarding impacts, patients indicated high and stable satisfaction rates (M = 4.4/5; SD = 0.76). Furthermore, thematic analysis identified "positive interactions," "co-learning," "self-determination," and "the collective management of confidentiality" as important PE impacts for engaged patients.
This PE Project evaluation highlighted growing engagement levels, high satisfaction rates and the importance of a patient-centric approach to PE.
患者参与（PE），即患者通过合作和对自身专业知识的敏感性，对研究进行有意义的参与，正受到关注。然而，PE 计划的报告情况较差，人们对患者对 PE 的看法知之甚少。
记录和评估 I-Score 研究中 PE 项目的第一阶段（22 个月），该项目正在开发一种患者报告的 HIV 治疗依从性障碍测量工具，我们描述了所进行的 PE 的性质，确定了实现的 PE 水平，并从参与患者的角度介绍了其影响。
从社区和临床环境中招募了一个由十人组成的蒙特利尔委员会，他们都患有 HIV，并参与了：I-Score 研究决策、知识传播、对 HIV 患者体验的研究以及 PE 项目的评估。
评估采用了汇聚平行混合方法设计。数据收集包括参与者观察、满意度调查和会议记录/转录。分析包括报告 PE 活动、生成描述性统计数据和对定性材料进行主题分析。
PE 包括十二次会议，其中包括两次焦点小组（需求评估），此外还有四次知识传播活动。PE 水平有所提高：前四次定期会议涉及信息/咨询，而随后的会议则达到了影响/合作的程度。关于影响，患者表示满意度高且稳定（M=4.4/5；SD=0.76）。此外，主题分析确定了“积极互动”、“共同学习”、“自我决定”和“集体管理保密性”作为参与患者的重要 PE 影响。
本 PE 项目评估强调了不断提高的参与水平、高满意度以及以患者为中心的 PE 方法的重要性。
