QUEST Center for Responsible Research, Berlin Institute of Health at Charité, Berlin, Germany.
Health in Emergency and Disaster Research Center, Social Health Research Institute, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran.
Syst Rev. 2024 Oct 31;13(1):271. doi: 10.1186/s13643-024-02686-y.
Involving stroke patients in clinical research through patient engagement aims to ensure that studies are patient-centered, and may help ensure they are feasible, ethical, and credible, ultimately leading to enhanced trust and communication between researchers and the patient community. In this study, we have conducted a scoping review to identify existing evidence and gaps in SPSE.
The five-step approach outlined by Arksey and O'Malley, in conjunction with the Preferred Reporting Items for Scoping Reviews (PRISMA-ScR) guidelines, provided the structure for this review. To find relevant articles, we searched PubMed, Web of Science, and Embase databases up to February 2024. Additionally, the review team conducted a hand search using Google Scholar, key journals, and references of highly relevant articles. Reviewers screened articles, selecting eligible English-language ones with available full texts, and extracted data from them into a pre-designed table tested by the research team.
Of the 1002 articles initially identified, 21 proved eligible. Stakeholder engagement primarily occurred during the design phase of studies and within the studies using qualitative methodologies. Although the engagement of stakeholders in the research process is increasing, practice regarding terminology and principles of implementation remains variable. Researchers have recognized the benefits of stakeholder engagement, but have also faced numerous challenges that often arise during the research process.
The current study identifies stakeholder groups and the benefits and challenges researchers face in implementing their engagement. Given existing challenges and limited specific models or frameworks, it is suggested to explore applied recommendations for stakeholder engagement in future studies, that may enhance stakeholder engagement, overcome obstacles, and unify researchers' understanding of engagement and implementation.
通过患者参与将中风患者纳入临床研究旨在确保研究以患者为中心，并可能有助于确保研究具有可行性、伦理道德和可信度，最终有助于增强研究人员和患者群体之间的信任和沟通。在这项研究中，我们进行了范围综述，以确定 SPSE 中的现有证据和差距。
阿特赛和奥马利概述的五步方法，结合首选报告项目用于范围综述（PRISMA-ScR）指南，为本次综述提供了结构。为了找到相关文章，我们搜索了 PubMed、Web of Science 和 Embase 数据库，截至 2024 年 2 月。此外，综述团队使用 Google Scholar、重点期刊和高度相关文章的参考文献进行了手工搜索。审查员筛选文章，选择符合条件的英文文章，并从其中提取可用全文的文章的数据到预先设计的表格中，该表格由研究团队进行测试。
最初确定的 1002 篇文章中，有 21 篇符合条件。利益相关者的参与主要发生在研究的设计阶段和使用定性方法的研究中。尽管利益相关者在研究过程中的参与度在增加，但关于术语和实施原则的实践仍然存在差异。研究人员已经认识到利益相关者参与的好处，但也面临着许多在研究过程中经常出现的挑战。
目前的研究确定了利益相关者群体以及研究人员在实施利益相关者参与时面临的好处和挑战。鉴于现有挑战和有限的具体模型或框架，建议在未来的研究中探索利益相关者参与的应用建议，这可能会增强利益相关者的参与，克服障碍，并统一研究人员对参与和实施的理解。
