QUEST Center for Responsible Research, Berlin Institute of Health at Charité, Berlin, Germany.
Department of Experimental Neurology, Charité Universitätsmedizin Berlin, Berlin, Germany.
Syst Rev. 2023 Sep 30;12(1):180. doi: 10.1186/s13643-023-02347-6.
This protocol describes a systematic scoping review of Stroke Patient and Stakeholder Engagement (SPSE), concepts, definitions, models, implementation strategies, indicators, or frameworks. The active engagement of patients and other stakeholders is increasingly acknowledged as essential to patient-centered research to answer questions of importance to patients and their caregivers. Stroke is a debilitating, long-lasting burden for individuals, their families, and healthcare professionals. They require rehabilitation services, health care system assistance, and social support. Their difficulties are unique and require the continued involvement of all parties involved. Understanding SPSE in research is fundamental to healthcare planning and extends the role of patients and stakeholders beyond that of the study subject. We will conduct a systematic literature search to identify the types of existing evidence related to SPSE, implementation strategies, indicators, or frameworks related to Patient and Stakeholder Engagement (PSE); clarify key concepts, definitions, and components of SPSE; compile experiences and prerequisites; and identify stroke research internationally. Two independent reviewers will extract data from selected studies onto a customized extraction form that has already been piloted. We integrate existing knowledge to address gaps in the literature on SPSE research by presenting the model, implementation strategies, indicators, and frameworks for stroke patients. We hope that these findings will offer future researchers a clear picture and conceptual model of SPSE.
本方案描述了对卒中患者和利益相关者参与(SPSE)、概念、定义、模型、实施策略、指标或框架的系统范围综述。越来越多的人认识到,积极地让患者和其他利益相关者参与,对于以患者为中心的研究至关重要,以回答对患者及其护理人员重要的问题。卒中给个人、他们的家庭和医疗保健专业人员带来了严重的、持久的负担。他们需要康复服务、医疗保健系统的帮助和社会支持。他们的困难是独特的,需要所有相关方的持续参与。了解研究中的 SPSE 是医疗保健规划的基础,它将患者和利益相关者的角色扩展到研究对象之外。我们将进行系统的文献检索,以确定与 SPSE、实施策略、指标或框架相关的现有证据类型,这些证据与患者和利益相关者的参与(PSE)有关;阐明 SPSE 的关键概念、定义和组成部分;编制经验和先决条件;并确定国际卒中研究。两名独立的审查员将从选定的研究中提取数据到一个已经经过试点的定制提取表上。我们整合现有的知识,通过呈现卒中患者的模型、实施策略、指标和框架,来解决 SPSE 研究文献中的空白。我们希望这些发现将为未来的研究人员提供 SPSE 的清晰图景和概念模型。