ArticleBMJ open2021
Public involvement and engagement in big data research: protocol for a scoping review and a systematic review of delivery and effectiveness of strategies for involvement and engagement.
Article in BMJ open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 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
6 citing papers in PubMed.
- Patient and Public Involvement and Engagement (PPIE) in methodological research: exploring challenges, tensions and learning from the perspectives of PPIE and researchers in the Realist Economic Evaluation Methods (REEM) study.Research involvement and engagement · 2026Article
- Defining Patient and Public Involvement and Engagement Tasks in Health Data Research: A Consensus Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- 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
- '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
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionBig data research has grown considerably over the last two decades. This presents new ethical challenges around consent, data storage and anonymisation. Big data research projects require public support to succeed and it has been argued that one way to achieve this is through public involvement and engagement. To better understand the role public involvement and engagement can play in big data research, we will review the current literature. This protocol describes the planned review methods. METHODS AND ANALYSIS: Our review will be conducted in two stages. In the first stage, we will conduct a scoping review using Arksey and O'Malley methodology to comprehensively map current evidence on public involvement and engagement in big data research. Databases (CINAHL, Health Research Premium Collection, PubMed, Scopus, Web of Science) and grey literature will be searched for eligible papers. We provide a narrative description of the results based on a thematic analysis. In the second stage, out of papers found in the scoping review which discuss involvement and engagement strategies, we will conduct a systematic review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, exploring the delivery and effectiveness of these strategies. We will conduct a qualitative synthesis. Relevant results from the quantitative studies will be extracted and placed under qualitative themes. Individual studies will be appraised through Mixed Methods Appraisal Tool (MMAT), we will then assess the overall confidence in each finding through Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual). Results will be reported in a thematic and narrative way. ETHICS AND DISSEMINATION: This protocol sets out how the review will be conducted to ensure rigour and transparency. Public advisors were involved in its development. Ethics approval is not required. Review findings will be presented at conferences and published in peer-reviewed journals.
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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.