ArticleHealth expectations : an international journal of public participation in health care and health policy2023
'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.
Article in Health expectations : an international journal of public participation in health care and health policy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
11 citing papers in PubMed.
- Identifying aspects of palliative and end-of-life care that are most important to people with lived experience and can be measured using routine data: a series of patient and public involvement workshops.Journal of patient-reported outcomes · 2026Article
- What approaches are used to facilitate people from under-served communities getting involved with health research? A public contributor led review.Research involvement and engagement · 2025Review
- Involving Experts by Experience in Craniofacial Research.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2025Article
- 'Hell No!'-Exploring Scepticism in UK Health Research Since COVID-19 Amongst Communities Who Have Been Labelled 'Underserved'.Sociology of health & illness · 2025Article
- Am I attached? A patient-partnered approach to creating infographics about attachment to primary care in Ontario, Canada.Research involvement and engagement · 2024Article
- Public Involvement and Engagement in Big Data Research: Scoping Review.Journal of participatory medicine · 2024Article
- Evaluation of Public Involvement in Doctoral Research Using a Four-Dimensional Theoretical Framework.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- 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.International journal of population data science · 2024Article
- Participatory evaluation of the process of co-producing resources for the public on data science and artificial intelligence.Research involvement and engagement · 2023Article
- '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.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Exploring how to improve the involvement of Polish and South Asian communities around big data research. A qualitative study using COM-B model.International journal of population data science · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
backgroundBig 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.
objectiveWe explored how researchers involve and engage seldom-heard communities around big data research.
methodsThis 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.
resultsThe 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.
conclusionThe 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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.