‘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

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.

Establishing a national linked database for fetal alcohol spectrum disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility

“…Public involvement and engagement have been recognised as an essential step in gaining public support in big data research, and for ensuring that such endeavours reflect public views and priorities [49][50][51][52][53]. Following best practice guidelines, we adopted a flexible, multimethod approach to make our public involvement work as inclusive and accessible as possible for different stakeholder groups, and involved contributors at the earliest stages of our project [44,52].…”

“…Similarly, Teodorowski and colleagues (2023) highlighted that big data can be an abstract and complex topic to discuss with the public, especially among ‘seldom-heard’ groups, including those with disabilities [49]. This issue is likely to be compounded in the case of FASD, as individuals with FASD often face challenges with abstract reasoning [12].…”

“…This issue is likely to be compounded in the case of FASD, as individuals with FASD often face challenges with abstract reasoning [12]. The literature suggests that animations and visualisations may make discussions around big data more accessible for the public [49]. This is something that we plan to use to a greater extent in future PPI work on this topic.…”

Exploring how to improve the involvement of Polish and South Asian communities around big data research. A qualitative study using COM-B model

“…Secondly, researchers should develop trustworthy and ongoing relationship with the community. However, maintaining these relationships may be challenging and time-consuming for researchers [ 54 ]. Furthermore, researchers can be constrained by funding requirements and might not be able to keep that relationship ongoing.…”

Participatory evaluation of the process of co-producing resources for the public on data science and artificial intelligence

“…We recognise that we managed to capture the ongoing experience of everyone during three months of photovoice, but for previous months, this was mostly reflective and was not apparent in the findings. Teodorowski and colleagues [ 54 ], explored the experiences of researchers and public involvement facilitators in involving and engaging seldom-heard communities in big data research; they recognise that there is no one right approach to working with all communities. Our evaluation suggests that researchers can use creative approaches as one of the effective ways of involving members of the public around data science and AI.…”