Patient engagement in research: a systematic review
Patient engagement in research: a systematic review
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DOI：
10.1186/1472-6963-14-89
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发表时间：
2014-02-26
影响因子：
2.8
通讯作者：
Murad, Mohammad Hassan
中科院分区：
文献类型：
--
作者：
Domecq, Juan Pablo;Prutsky, Gabriela;Murad, Mohammad Hassan
背景：一个令人信服的伦理理由支持患者参与医疗保健研究。它还假设，患者的参与将导致更相关的研究结果，与患者的关切和困境。然而，目前还不清楚如何最好地进行这一过程。在这项系统性综述中，我们旨在回答4个关键问题：识别患者代表的最佳方法是什么？如何让他们参与设计和进行研究？观察到患者参与的好处是什么？患者参与的危害和障碍是什么？方法：我们检索了MEDLINE、EMBASE、PancINFO、Cochrane、EBSCO、CINAHL、Scope、Web of Science、Business Search Premier、学术搜索Premier和Google Scholar。纳入的研究都是以英文发表的，任何规模或设计都描述了患者或他们的代理人参与研究设计的情况。我们对灰色文献进行了环境扫描，并咨询了专家和患者。使用非定量、元叙事的方法对数据进行分析。结果：我们纳入了142项研究，描述了一种参与的光谱。总体而言，参与在大多数情况下都是可行的，最常见的是在研究开始时(议程制定和礼宾制定)，较少在研究的执行和翻译期间进行。我们发现没有比较分析研究来推荐一种特定的方法。患者参与增加了研究注册率，并帮助研究人员获得资金、设计研究方案和选择相关结果。最常被提及的挑战与后勤(参与所需的额外时间和资金)有关，以及对象征性参与的最大担忧。结论：患者参与医疗研究在许多情况下可能是可行的。然而，这种接触是有代价的，可能会成为象征性的。致力于确定实现参与的最佳方法的研究是缺乏的，显然需要这样的研究。
Background: A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients' concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement?Methods: We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach.Results: We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement.Conclusions: Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.