University of Montreal Hospital Research Center (CRCHUM), Montreal, QC, Canada.
Department of family medicine, University of Montreal, Montreal, QC, Canada.
Health Expect. 2018 Dec;21(6):1075-1084. doi: 10.1111/hex.12804. Epub 2018 Jul 30.
Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published.
Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making.
We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject-matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability.
In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public.
A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.
患者和公众的参与度在不断提高，但评估工作仍十分有限。虽然已经有一些评估工具用于评估患者在个体决策中的参与度，但在研究和卫生系统领域尚未有类似的评估工具。
系统地评价和评估研究和卫生系统决策中患者和公众参与的评估工具。
我们检索了 1980 年 1 月至 2016 年 2 月间发表的文献。检索了电子数据库（Ovid MEDLINE、Embase、Cochrane 系统评价数据库、CINAHL 和 PsycINFO），并通过 Google、专题专家、社交媒体和参与组织网站获取了灰色文献。两名独立的评审员根据 4 项评估标准评估了这些评估工具：科学性、患者和公众的观点、全面性和可用性。
共确定了 10663 个独特的参考文献，其中 27 个被纳入。这些工具大多是在过去十年中开发的，旨在支持参与活动的改进。只有 11%的工具是基于文献综述明确设计的，只有 7%的工具经过了可靠性测试。患者和公众成员参与设计了 56%的工具，主要是在试点阶段，18.5%的工具旨在向患者和公众报告评估结果。
越来越多的评估工具可用于支持患者和公众参与研究和卫生系统决策。然而，此类评估工具的开发科学性可以得到提高，患者和公众在设计和报告方面的参与程度也可以得到提高。
