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患者及公众参与研究:青年研究者实用资源综述

Patient and public involvement in research: a review of practical resources for young investigators.

作者信息

Arumugam Ashokan, Phillips Lawrence Rick, Moore Ann, Kumaran Senthil D, Sampath Kesava Kovanur, Migliorini Filippo, Maffulli Nicola, Ranganadhababu Bathri Narayanan, Hegazy Fatma, Botto-van Bemden Angie

机构信息

Department of Physiotherapy, College of Health Sciences, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates.

Neuromusculoskeletal Rehabilitation Research Group, RIMHS-Research Institute of Medical and Health Sciences, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates.

出版信息

BMC Rheumatol. 2023 Mar 9;7(1):2. doi: 10.1186/s41927-023-00327-w.

Abstract

Patient and public involvement (PPI) in every aspect of research will add valuable insights from patients' experiences, help to explore barriers and facilitators to their compliance/adherence to assessment and treatment methods, bring meaningful outcomes that could meet their expectations, needs and preferences, reduce health care costs, and improve dissemination of research findings. It is essential to ensure competence of the research team by capacity building with available resources on PPI. This review summarizes practical resources for PPI in various stages of research projects-conception, co-creation, design (including qualitative or mixed methods), execution, implementation, feedback, authorship, acknowledgement and remuneration of patient research partners, and dissemination and communication of research findings with PPI. We have briefly summarized the recommendations and checklists, amongst others, for PPI in rheumatic and musculoskeletal research (e.g. the European Alliance of Associations for Rheumatology (EULAR) recommendations, the Core Outcome Measures in Effectiveness Trials (COMET) checklist and the Guidance for Reporting Involvement of Patients and the Public (GRIPP) checklist). Various tools that could be used to facilitate participation, communication and co-creation of research projects with PPI are highlighted in the review. We shed light on the opportunities and challenges for young investigators involving PPI in their research projects, and have summarized various resources that could be used to enhance PPI in various phases/aspects of research. A summary of web links to various tools and resources for PPI in various stages of research is provided in Additional file 1.

摘要

患者和公众参与(PPI)研究的各个方面,将从患者的经历中增添宝贵见解,有助于探索阻碍或促进他们遵守/坚持评估及治疗方法的因素,带来符合他们期望、需求和偏好的有意义结果,降低医疗成本,并改善研究结果的传播。通过利用现有的PPI资源进行能力建设,确保研究团队具备能力至关重要。本综述总结了在研究项目的各个阶段(构思、共同创造、设计(包括定性或混合方法)、执行、实施、反馈、患者研究伙伴的作者身份、认可和报酬,以及带有PPI的研究结果的传播和交流)进行PPI的实用资源。我们简要总结了风湿和肌肉骨骼研究中PPI的建议和清单等(例如,欧洲风湿病协会联盟(EULAR)的建议、有效性试验核心结局指标(COMET)清单以及患者和公众参与报告指南(GRIPP)清单)。综述中强调了可用于促进与PPI共同参与、交流和共同创造研究项目的各种工具。我们阐明了年轻研究人员在其研究项目中纳入PPI的机遇和挑战,并总结了可用于在研究的各个阶段/方面加强PPI的各种资源。补充文件1中提供了研究各个阶段PPI的各种工具和资源的网页链接汇总。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3847/9996937/1ef85fb225f4/41927_2023_327_Fig1_HTML.jpg

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