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科学家和脊髓损伤患者之间公平的伙伴关系将加强研究的范围、质量和成果。

Equitable partnerships between scientists and persons living with spinal cord injury will strengthen research scope, quality, and outcomes.

机构信息

Department of Physical Medicine and Rehabilitation, MetroHealth System, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA.

出版信息

Curr Opin Neurol. 2021 Dec 1;34(6):783-788. doi: 10.1097/WCO.0000000000000989.

DOI:10.1097/WCO.0000000000000989
PMID:34545013
Abstract

PURPOSE OF REVIEW

Partnerships across all stakeholders in the research process strengthen the outcomes and ultimate usability of research. The purpose of this review is to discuss the current level of inclusion of people living with spinal cord injury (SCI) in the research process, the science of engagement and benefits of partnerships in research, and emerging resources available to help promote ethical and effective partnerships in SCI research.

RECENT FINDINGS

Significant strides have been made in interacting with people living with SCI to help identify the problem(s) that are important to study (i.e. the first step in the research process). The SCI research field is lagging in partnering with people living with SCI throughout the rest of the research process despite a plethora of evidence-based principles and strategies for effective partnerships in the broader context of research. There are several emerging resources specific to SCI to help researchers and the community begin to build meaningful partnerships throughout the entire cycle of research.

SUMMARY

The SCI research field already values partnerships with clinicians and promotes the concept of 'bench-to-bedside and back again'. Now is the time to take it a step further to 'bench-to-bedside-to-community and back again'.

摘要

目的综述:研究过程中所有利益相关者之间的合作可以加强研究结果和最终的实用性。本综述旨在讨论当前纳入脊髓损伤(SCI)患者参与研究的程度、参与研究的科学性和合作的益处,以及现有的新兴资源,以帮助促进 SCI 研究中合乎道德且有效的合作。

最新发现:在与 SCI 患者互动以帮助确定重要的研究问题(即研究过程的第一步)方面已经取得了重大进展。尽管在更广泛的研究背景下有许多关于有效合作的循证原则和策略,但在整个研究过程中,与 SCI 患者合作的 SCI 研究领域仍然滞后。有一些专门针对 SCI 的新兴资源可以帮助研究人员和社区开始在整个研究周期中建立有意义的合作。

总结:SCI 研究领域已经重视与临床医生的合作,并提倡“从基础到临床再回到基础”的理念。现在是更进一步的时候了,要“从基础到临床到社区再回到基础”。

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