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“我们并非难以接触,但我们可能发现难以信任”……让“很少被倾听”的社区声音参与到临床转化健康研究中:一种社会创新方法。

"We are not hard to reach, but we may find it hard to trust" …. Involving and engaging 'seldom listened to' community voices in clinical translational health research: a social innovation approach.

作者信息

Islam Safina, Joseph Olivia, Chaudry Atiha, Forde Davine, Keane Annie, Wilson Cassie, Begum Nasima, Parsons Suzanne, Grey Tracy, Holmes Leah, Starling Bella

机构信息

Public Programmes Team (now Vocal), Manchester University NHS Foundation Trust (currently, Ahmed Iqbal Ullah RACE Centre), Manchester, UK.

Public Programmes Team, Manchester University NHS Foundation Trust (currently, Yorkshire Quality and Safety Research Group), Manchester, UK.

出版信息

Res Involv Engagem. 2021 Jun 26;7(1):46. doi: 10.1186/s40900-021-00292-z.

Abstract

BACKGROUND

Public involvement in clinical translational research is increasingly recognised as essential for relevant and reliable research. Public involvement must be diverse and inclusive to enable research that has the potential to reach those that stand to benefit from it the most, and thus address issues of health equity. Several recent reports, however, indicate that public involvement is exclusive, including in its interactions with ethnic groups. This paper outlines a novel community-led methodology - a community sandpit - to address the inclusion of ethnic groups in public involvement in research, reports on its evaluation, findings, legacy and impact.

METHODS

Through detailed planning - thinking through and taking into account all stakeholders perspectives in the planning and design of the sandpit, relationship-building, co-design and co-delivery between the Public Programmes team based at Manchester University NHS Foundation Trust and the Greater Manchester Black and Minority Ethnic Network - the community sandpit was held in July 2018.

RESULTS

Fifteen community organisations took part in the two-day event, as well as six researchers, and six creative practitioners. Six community-based partnership projects were seed-funded; four of these received additional funding from other sources also.

CONCLUSIONS

Evaluation of the sandpit showed the format to be well-received by all: it levelled power relationships between community organisations, health researchers and research infrastructure; it developed capacity amongst researchers about the accessibility, role and potential of community organisations. Described as "not another community seed fund" by community partners, the sandpit offered community partners, equitable avenues for collaboration within Greater Manchester translational research and led to the formation of the Black, Asian and Minority Ethnic Research Advisory Group (BRAG Vocal Website information, - https://www.wearevocal.org/opportunities/black-asian-and-minority-ethnic-research-advisory-group-brag/ , 2021). The method has the potential to be replicated elsewhere to support inclusive public involvement in research and inclusive research.

摘要

背景

公众参与临床转化研究日益被视为开展相关且可靠研究的关键要素。公众参与必须具有多样性和包容性,以便开展有可能惠及最需要之人的研究,从而解决健康公平问题。然而,最近的几份报告表明,公众参与具有排他性,包括在与不同种族群体的互动中。本文概述了一种由社区主导的全新方法——社区沙坑法,以解决在公众参与研究中纳入不同种族群体的问题,并报告其评估、结果、遗产和影响。

方法

通过详细规划——在沙坑的规划和设计过程中充分考虑所有利益相关者的观点、建立关系、共同设计以及曼彻斯特大学国民保健服务基金会信托基金的公共项目团队与大曼彻斯特黑人和少数族裔网络之间的共同实施——于2018年7月举办了社区沙坑活动。

结果

15个社区组织、6名研究人员和6名创意从业者参加了为期两天的活动。为6个基于社区的合作项目提供了种子资金;其中4个项目还从其他来源获得了额外资金。

结论

对沙坑活动的评估表明,这种形式受到了各方的广泛欢迎:它平衡了社区组织、健康研究人员和研究基础设施之间的权力关系;提高了研究人员对社区组织的可及性、作用和潜力的认识。社区合作伙伴称其为“不是另一个社区种子基金”,沙坑为社区合作伙伴提供了在大曼彻斯特转化研究中进行公平合作的途径,并促成了黑人和少数族裔研究咨询小组(BRAG Vocal网站信息,- https://www.wearevocal.org/opportunities/black-asian-and-minority-ethnic-research-advisory-group-brag/ ,2021)的成立。该方法有可能在其他地方得到推广,以支持公众对研究的包容性参与和包容性研究。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/aee0/8234650/d6fae02da75d/40900_2021_292_Fig1_HTML.jpg

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