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研究家庭咨询委员会:患者及家属对实施以研究为重点的患者参与策略的看法。

The Research Family Advisory Committee: the patient and family view of implementing a research-focused patient engagement strategy.

作者信息

Buchanan Francine, Peasgood Amy, Easton Megan, Haas Karen, Narayanan Unni

机构信息

Research Family Advisory Committee, Hospital for Sick Children Research Institute, The Hospital for Sick Children (SickKids), 555 University Ave, Toronto, ON, M5G1X8, Canada.

Child Health Evaluative Sciences, The SickKids Research Institute, Toronto, Canada.

出版信息

Res Involv Engagem. 2022 Feb 5;8(1):2. doi: 10.1186/s40900-022-00335-z.

Abstract

Patient engagement in research, a collaborative practice of including patients and families as active and respected partners in the research process, leads to improved quality of patient care and positively affects outcomes for patients and families. There is strong support for the benefits of patient engagement. What is less clear are the methods by which organizations can achieve authentic patient engagement in research and the ways a committee structure can support an institutional research engagement need beyond the individual investigators. In this report, we describe the mechanisms needed to support the implementation of a research-focused patient engagement strategy and lessons learned from the patient and family perspective.

摘要

患者参与研究是一种将患者及其家属作为积极且受尊重的合作伙伴纳入研究过程的协作实践,它能提高患者护理质量,并对患者及其家属的治疗结果产生积极影响。患者参与研究的益处得到了有力支持。但尚不清楚的是,组织实现真正的患者参与研究的方法,以及委员会结构如何能在个体研究者之外,支持机构研究参与需求。在本报告中,我们描述了支持以研究为重点的患者参与策略实施所需的机制,以及从患者和家属角度吸取的经验教训。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/96fc/8817605/f69e439b2a4a/40900_2022_335_Fig1_HTML.jpg

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