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

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.