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
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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. Author summary: Large-scale health datasets, often called “big data”, are increasingly used in medical research to identify patterns in disease, treatment, and healthcare use. Despite this, little is known about what children and young people (CYP), particularly those from underserved groups, think about how their health data should be used in research. We conducted a systematic review to address this gap, focusing specifically on the use of big data in CYP healthcare research. We found that CYP, parents, and carers were broadly supportive of data-driven healthcare research, but only under certain conditions. They raised important concerns about privacy, the risk of being identified from their data, and the possibility of data being misused, particularly by commercial organisations. They also recognised the potential for this research to benefit society and help others with similar experiences. Support for data use was greater where clear safeguards were in place, including strong privacy protections, independent oversight, and meaningful involvement in decisions about how data are used. Our findings highlight the importance of listening to underrepresented groups, who have historically had limited influence over research design and implementation, to ensure that future data-driven research is conducted ethically and that its benefits are distributed equitably.
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BibTeX
@article{burdge2026perceptions,
title = {{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}},
author = {Charlotte Burdge and Anne-Marie Burn and Lily Zhang and Sasha Menon and Karolina Kaminska and Sophie Wallace-Hanlon and Maria Fischer and Camille Evans and Peter Fonagy and Anna Wiedemann and Jessica Young and Anna Moore and Joanna K. Anderson},
journal = {PLOS Digital Health},
year = {2026},
month = oct,
doi = {10.1371/journal.pdig.0001434},
url = {https://journals.plos.org/digitalhealth/article?id=10.1371/journal.pdig.0001434},
note = {CC BY},
}
RIS
TY - JOUR
TI - 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
AU - Charlotte Burdge
AU - Anne-Marie Burn
AU - Lily Zhang
AU - Sasha Menon
AU - Karolina Kaminska
AU - Sophie Wallace-Hanlon
AU - Maria Fischer
AU - Camille Evans
AU - Peter Fonagy
AU - Anna Wiedemann
AU - Jessica Young
AU - Anna Moore
AU - Joanna K. Anderson
PY - 2026
DA - 2026/10/01
JO - PLOS Digital Health
DO - 10.1371/journal.pdig.0001434
UR - https://journals.plos.org/digitalhealth/article?id=10.1371/journal.pdig.0001434
AB - 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. Author summary: Large-scale health datasets, often called “big data”, are increasingly used in medical research to identify patterns in disease, treatment, and healthcare use. Despite this, little is known about what children and young people (CYP), particularly those from underserved groups, think about how their health data should be used in research. We conducted a systematic review to address this gap, focusing specifically on the use of big data in CYP healthcare research. We found that CYP, parents, and carers were broadly supportive of data-driven healthcare research, but only under certain conditions. They raised important concerns about privacy, the risk of being identified from their data, and the possibility of data being misused, particularly by commercial organisations. They also recognised the potential for this research to benefit society and help others with similar experiences. Support for data use was greater where clear safeguards were in place, including strong privacy protections, independent oversight, and meaningful involvement in decisions about how data are used. Our findings highlight the importance of listening to underrepresented groups, who have historically had limited influence over research design and implementation, to ensure that future data-driven research is conducted ethically and that its benefits are distributed equitably.
SN - 2767-3170
ER -