ArticlePLOS digital health2026
Perceptions, attitudes, and concerns of underrepresented groups regarding the use of big data in children and young people's healthcare research - A systematic literature review.
Article in PLOS digital health, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Children and young people (CYP), and those from underserved groups, remain underrepresented in biomedical research. Understanding their perspectives on large-scale, data-driven healthcare research is essential to ensuring that such approaches are acceptable, ethically conducted, and equitable. This review is the first to systematically examine the perceptions, attitudes, and concerns of underrepresented groups regarding the use of big data in CYP healthcare research. Seven bibliographic databases, ASSIA, CINAHL, EMBASE, MEDLINE, PsycINFO, Scopus, and Web of Science, were searched alongside grey literature sources. A mixed-methods systematic review design was used. Included studies captured the views of CYP, particularly those from underserved groups, as well as their parents or carers, acting as proxy decision-makers, regarding the use of big data in paediatric healthcare research. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT), and findings were integrated through narrative synthesis. Seventeen studies were included, capturing perspectives from 6,261 participants, including at least 4,710 CYP and 1,443 parents and carers; one study did not report participant numbers separately by group. Underrepresented groups expressed broadly favourable, but conditional, support for the use of big data in paediatric healthcare research. Willingness to share data was shaped by participant characteristics, lived experience, and trust in institutions. Perceived benefits included societal and public health gains, the opportunity to empower others with similar experiences, and the advancement of scientific progress. Concerns centred on privacy, the risk of re-identification, data misuse, commercial exploitation, and limited transparency in data governance. Conditions for acceptable data use included robust anonymisation, independent ethical oversight, and developmentally appropriate consent processes. Underrepresented groups hold broadly supportive, but conditional, views on the use of big data in paediatric healthcare research. Embedding inclusive governance practices and engaging these communities in research design will be essential to ensuring that data-driven paediatric research is both ethical and equitable.
Identifiers
What Socratic 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 Socratic graph.