Hall Patricia, Kroll Thilo, Hickey Julianne, Stokes Diarmuid, Lennon Olive
iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, Dublin, D02 H903, Ireland.
School of Public Health, Physiotherapy and Sports Science, Health Science Centre, University College Dublin, Belfield, Dublin 4, D04 C7X2, Ireland.
HRB Open Res. 2022 Jul 28;4:118. doi: 10.12688/hrbopenres.13449.2. eCollection 2021.
Growing consensus supports public and patient involvement (PPI) in research as the lived experience of patients, family carers and users of health and social care services bring unique insights to healthcare research. The impact and burden of stroke present ongoing challenges for those living with its consequences and could potentially limit PPI activity. This review aims to explore PPI in published stroke research to identify and describe the extent, nature and design of PPI activities, the type/s of studies involved and the profile of PPI participants engaged in stroke research. This systematic scoping review, guided by the Arksey & O'Malley five step framework, will be reported according to the PRISMA-ScR reporting guidelines. PPI is embedded at each stage of this proposed scoping review from conceptualisation, participation, contribution and collaboration. The Population, Concept, Context (PCC) structure defines the research question which asks - How is PPI in stroke research currently being conducted and how do the study authors report their PPI activities and its impact? A comprehensive range of electronic databases including PubMed, CINAHL, EMBASE, PsychINFO and the Cochrane Database of Systematic Reviews will generate a broad range of studies. Grey literature (e.g. OpenGrey, Lenus) and internationally recognised stroke organisation websites will be searched for additional research reports. Data extraction will adhere to the Joanna Briggs Institute guidelines, with results collated and mapped to the research cycle stage/s. s: The outlined scoping review protocol will comprehensively identify and map the existing scientific literature that reports PPI in stroke research. Findings will be presented in relation to PPI conceptualisation, participant profiles and activities in stroke research, volume, type and range of approaches. Knowledge gaps may be identified thereby offering opportunities and recommendations for future priorities for PPI in stroke research.
越来越多的共识支持公众和患者参与（PPI）研究，因为患者、家庭护理人员以及健康和社会护理服务使用者的生活经历能为医疗保健研究带来独特见解。中风的影响和负担给受其影响的人们带来了持续挑战，可能会限制PPI活动。本综述旨在探讨已发表的中风研究中的PPI，以识别和描述PPI活动的范围、性质和设计、所涉及的研究类型以及参与中风研究的PPI参与者概况。 本系统综述将以Arksey和O'Malley的五步框架为指导，按照PRISMA-ScR报告指南进行报告。PPI贯穿于本拟议综述的各个阶段，从概念化、参与、贡献到合作。人口、概念、背景（PCC）结构界定了研究问题，即——中风研究中的PPI目前是如何开展的，研究作者如何报告他们的PPI活动及其影响？一系列综合电子数据库，包括PubMed、CINAHL、EMBASE、PsychINFO和Cochrane系统评价数据库，将生成广泛的研究。将搜索灰色文献（如OpenGrey、Lenus）和国际认可的中风组织网站以获取更多研究报告。数据提取将遵循乔安娜·布里格斯研究所的指南，结果将进行整理并映射到研究周期阶段。本综述方案将全面识别和梳理报告中风研究中PPI的现有科学文献。将呈现与中风研究中PPI概念化、参与者概况和活动、方法的数量、类型和范围相关的研究结果。可能会识别出知识空白，从而为中风研究中PPI的未来优先事项提供机会和建议。
