Athena Institute, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
Health Expect. 2020 Feb;23(1):5-18. doi: 10.1111/hex.12951. Epub 2019 Sep 6.
Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision-making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies.
Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods.
We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut-off of publications after July 2018.
Data were extracted from 91 publications, coded and thematically analysed.
A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement.
Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.
展示参与如何为所有利益相关者增加价值，可以有效地激励更广泛地实施患者参与。然而，目前尚不清楚哪些方法可以最好地用于评估患者参与度。本文重点介绍了在药物研发过程中的三个决策点评估患者参与度的方法：研究重点设定、临床试验设计以及与监管机构和卫生技术评估机构的早期对话。
我们旨在回顾关于监测和评估患者参与度的文献，重点关注指标和方法。
我们进行了一项范围广泛的文献综述，采用系统搜索，包括学术和灰色文献，重点关注与患者参与度相关的评估方法或结果。除了 2018 年 7 月以后出版的出版物截止日期外，没有应用其他时间限制。
从 91 篇出版物中提取数据、编码和进行主题分析。
确定了患者参与的 18 项收益和 5 项成本，并与 28 项可能的评估指标进行了映射。为评估患者参与的收益和成本，发现了几种定量和定性方法。
目前可用的指标和方法在衡量影响方面有一定的作用，但不足以了解影响的途径，也不能确定研究人员和患者之间的互动是否会导致变化。我们建议，最好通过应用一整套连贯的措施，而不是单一指标来确定患者参与的影响。
