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将脊髓损伤患者纳入研究,使其成为参与者、合作伙伴和工作人员。

Including People with Spinal Cord Injury in Research as Participants, Partners, and Personnel.

作者信息

Anderson Kim D

机构信息

Department of Physical Medicine and Rehabilitation, MetroHealth System, School of Medicine, Case Western Reserve University, Cleveland, OH 44109, USA.

出版信息

Int J Environ Res Public Health. 2023 Jul 28;20(15):6466. doi: 10.3390/ijerph20156466.

DOI:10.3390/ijerph20156466
PMID:37569008
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10418427/
Abstract

Individuals with disabilities are significantly underrepresented in research and are often not included in discussions on diversity, equity, inclusion, and accessibility. The Advisory Committee to the National Institutes of Health Director Working Group on Diversity formed an ad hoc Subgroup on Individuals with Disabilities to develop recommendations on how to enhance the inclusion of people with disabilities in the scientific workforce as well as throughout the research ecosystem. The article summarizes those recommendations and how they came about, then contextualizes them for the spinal cord injury (SCI) research field. Other fields that do not typically include individuals with disabilities in research can learn from the strong history of including people with SCI as research participants. There has been a growing drive within our field to enhance the inclusion of people living with SCI as research partners, but how are we doing with promoting their inclusion in the scientific workforce?

摘要

残疾人在研究中的代表性严重不足,并且在关于多样性、公平性、包容性和可及性的讨论中常常被排除在外。美国国立卫生研究院主任多样性工作组咨询委员会成立了一个关于残疾人的特设小组,以制定关于如何在科学工作队伍以及整个研究生态系统中加强残疾人纳入的建议。本文总结了这些建议及其形成过程,然后将其置于脊髓损伤(SCI)研究领域的背景下。其他通常在研究中不纳入残疾人的领域可以借鉴将脊髓损伤患者纳入研究参与者的悠久历史。我们这个领域越来越有动力将脊髓损伤患者作为研究伙伴纳入其中,但在促进他们融入科学工作队伍方面我们做得如何呢?

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本文引用的文献

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Historic highs in employment for people with disabilities: An unexpected pandemic outcome.残疾人就业率创历史新高:疫情带来的意外成果。
J Spinal Cord Med. 2023 Mar;46(2):165-166. doi: 10.1080/10790268.2023.2174314.
2
Equitable partnerships between scientists and persons living with spinal cord injury will strengthen research scope, quality, and outcomes.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。
Curr Opin Neurol. 2021 Dec 1;34(6):783-788. doi: 10.1097/WCO.0000000000000989.
3
Meeting Proceedings for SCI 2020: Launching a Decade of Disruption in Spinal Cord Injury Research.2020 年 SCI 会议记录:开启脊髓损伤研究的颠覆十年。
J Neurotrauma. 2021 May 1;38(9):1251-1266. doi: 10.1089/neu.2020.7174. Epub 2021 Feb 3.
4
Integrated Knowledge Translation Guiding Principles for Conducting and Disseminating Spinal Cord Injury Research in Partnership.在合作中进行和传播脊髓损伤研究的综合知识转化指导原则。
Arch Phys Med Rehabil. 2021 Apr;102(4):656-663. doi: 10.1016/j.apmr.2020.09.393. Epub 2020 Oct 28.
5
Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies.开展无障碍研究:将残疾人纳入公共卫生、流行病学和结局研究。
Am J Public Health. 2016 Dec;106(12):2137-2144. doi: 10.2105/AJPH.2016.303448. Epub 2016 Oct 13.
6
Person-first and identity-first language: Developing psychologists' cultural competence using disability language.以人为本和身份优先的语言:使用残疾语言发展心理学家的文化能力。
Am Psychol. 2015 Apr;70(3):255-64. doi: 10.1037/a0038636. Epub 2015 Feb 2.
7
Universal design of research: inclusion of persons with disabilities in mainstream biomedical studies.研究的通用设计:将残疾人士纳入主流生物医学研究中。
Sci Transl Med. 2011 May 11;3(82):82cm12. doi: 10.1126/scitranslmed.3002133.