Department of Public Health, Policy & Systems, University of Liverpool.
National Disease Registration Service, NHS England.
Int J Popul Data Sci. 2023 Jul 13;8(1):2130. doi: 10.23889/ijpds.v8i1.2130. eCollection 2023.
Involving public contributors helps researchers to ensure that public views are taken into consideration when designing and planning research, so that it is person-centred and relevant to the public. This paper will consider public involvement in big data research. Inclusion of different communities is needed to ensure everyone's voice is heard. However, there remains limited evidence on how to improve the involvement of seldom-heard communities in big data research.
This study aims to understand how South Asians and Polish communities in the UK can be encouraged to participate in public involvement initiatives in big data research.
Forty interviews were conducted with Polish (n=20) and South Asian (n=20) participants on Zoom. The participants were living in the United Kingdom and had not previously been involved as public contributors. Transcribed interviews were analysed using reflexive thematic analysis.
We identified eight themes. The 'happy to reuse data' theme sets the scene by exploring our participants' views towards big data research and under what circumstances they thought that data could be used. The remaining themes were mapped under the capability-opportunity-motivation-behaviour (COM-B) model, as developed by Michie and colleagues. This allowed us to discuss multiple factors that could influence people's willingness to become public contributors.
Our study is the first to explore how to improve the involvement and engagement of seldom-heard communities in big data research using the COM-B model. The results have the potential to support researchers who want to identify what can influence members of the public to be involved. By using the COM-B model, it is possible to determine what measures could be implemented to better engage these communities.
让公众参与有助于研究人员在设计和规划研究时考虑公众的意见，使研究以人为本，与公众息息相关。本文将探讨公众在大数据研究中的参与度。为了确保每个人的声音都被听到，需要包容不同的社区。然而，关于如何提高大数据研究中鲜为人知的社区的参与度，仍缺乏证据。
本研究旨在了解如何鼓励英国的南亚人和波兰社区参与大数据研究中的公众参与倡议。
通过 Zoom 对 40 名波兰（n=20）和南亚（n=20）参与者进行了访谈。参与者居住在英国，之前没有作为公众贡献者参与过。使用反思性主题分析对转录的访谈进行了分析。
我们确定了 8 个主题。“乐于重复使用数据”这一主题通过探讨参与者对大数据研究的看法以及他们认为在什么情况下可以使用数据，为我们的研究奠定了基础。其余主题根据 Michie 及其同事开发的能力-机会-动机-行为（COM-B）模型进行了映射。这使我们能够讨论影响人们成为公众贡献者意愿的多个因素。
本研究首次使用 COM-B 模型探讨了如何提高鲜为人知的社区在大数据研究中的参与度和参与度。研究结果有可能为希望确定哪些因素可以影响公众参与的研究人员提供支持。通过使用 COM-B 模型，可以确定可以采取哪些措施来更好地吸引这些社区。
