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“对我来说,这只是 1 和 0,但实际上,那就是死亡”:一项定性研究,探索研究人员在大数据研究中涉及和吸引很少被听到的社区的经验。

'To me, it's ones and zeros, but in reality that one is death': A qualitative study exploring researchers' experience of involving and engaging seldom-heard communities in big data research.

机构信息

Department of Public Health, Policy & Systems, University of Liverpool, Liverpool, UK.

National Disease Registration Service, NHS Digital, Liverpool, UK.

出版信息

Health Expect. 2023 Apr;26(2):882-891. doi: 10.1111/hex.13713. Epub 2023 Jan 24.

Abstract

BACKGROUND

Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom-heard voices, to ensure that a range of voices are heard and that research is meaningful to them.

OBJECTIVE

We explored how researchers involve and engage seldom-heard communities around big data research.

METHODS

This is a qualitative study. Researchers who had experience of involving or engaging seldom-heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio-recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences.

RESULTS

The analysis highlighted the complexity of involving and engaging seldom-heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution.

CONCLUSION

The study offers researchers a better understanding of how to involve and engage seldom-heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project-specific and dependent on the public contributors, researchers' needs, resources and time available.

PATIENT AND PUBLIC INVOLVEMENT

Two public contributors are authors of the paper and they were involved in the study design, analysis and writing.

摘要

背景

大数据研究需要公众的支持。有人认为,这可以通过公众的参与和投入来实现,以确保公众的意见成为研究项目的核心。研究人员应致力于包括各种社区,包括那些很少被听到的声音,以确保听到各种声音,并使研究对他们有意义。

目的

我们探讨了研究人员如何让大数据研究中很少被听到的社区参与并投入其中。

方法

这是一项定性研究。我们招募了有经验的研究人员,他们参与或投入大数据研究中很少被听到的社区。他们分别来自英国(n=5)、苏格兰(n=4)、比利时(n=2)和加拿大(n=1)。我们通过 Zoom 进行了 12 次半结构化访谈。所有访谈都进行了录音和转录,我们使用反思性主题分析来分析参与者的经验。

结果

分析突出了让大数据研究中很少被听到的社区参与并投入其中的复杂性。我们提出了四个主题来代表参与者的经验:(1)大数据的抽象和复杂性,(2)一刀切不适用,(3)合作工作,(4)增强公众的贡献。

结论

该研究为研究人员提供了更好的理解,了解如何以有意义的方式让大数据研究中很少被听到的社区参与并投入其中。没有一种正确的方法,参与和投入活动需要针对特定项目,并取决于公众贡献者、研究人员的需求、可用的资源和时间。

患者和公众参与

两位公众贡献者是本文的作者,他们参与了研究设计、分析和撰写。

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