Children and young people broadly support the use of health data for research that could improve lives, but they want strong safeguards, transparency, and greater involvement in decisions about how their information is used, a review led by researchers at the University of Cambridge has found.
The team reviewed the existing evidence, bringing together studies that capture the views of more than 4,700 children and young people and almost 1,500 parents and carers on the use of large health datasets – ‘big data’ – in children's healthcare research.
They found that children and young people, parents and carers were broadly supportive of using health data for research where there was a clear potential benefit, including improving healthcare, advancing scientific knowledge, and supporting people with similar experiences. However, support was conditional, with participants wanting research to be carried out ethically, by trustworthy organisations, and with appropriate safeguards and transparency around how their data are used.
Large-scale health datasets, drawn from electronic health records, administrative systems, registries, and digital technologies, are transforming healthcare research, generating insights into disease patterns, treatment outcomes, and population health trends.
However, there are often concerns about data being routinely reused beyond their original purpose, for example being sold to commercial companies, and about opaque governance structures and the fact that participants are typically far removed from researchers who analyse their information.
Studies of public attitudes to health data use have found broad but conditional support for data sharing, particularly where there is perceived public benefit and trust in the organisations involved. However, much of this evidence comes from general adult populations, with less evidence specifically exploring the views of children and young people, particularly those who are underrepresented in research.
Researchers from the Department of Psychiatry at the University of Cambridge carried out a systematic review of existing evidence among children and young people, including both qualitative and quantitative evidence. This allowed them to bring together findings from different types of research and identify common themes across the evidence base. Their findings are published today in PLOS Digital Health .
The review included 17 studies involving 6,261 participants, including at least 4,710 children and young people and 1,443 parents and carers.
Although participants were broadly supportive, they wanted strong protections to ensure their information is used safely and fairly. They were concerned about the potential loss of privacy and the possibility of being identified even when data are anonymised, and about the misuse of data by organisations, particularly commercial companies.
Trust was also and important issue. Young people were generally more comfortable sharing data when it was managed by trusted public organisations such as health services, universities, or non-profit researchers. They were less comfortable when private companies were involved.
A particularly important finding was that young people wanted a greater say in decisions about their data as they grow older. Some studies suggested that young people should become increasingly involved in decisions about consent and data use as they mature, rather than having decisions made entirely by parents or institutions.
Charlotte Burdge, a PhD student at the Department Psychiatry, University of Cambridge, who led the review, said:“‘Big data’ has the potential to unlock valuable insights into health and disease, but as our review has shown, we shouldn’t take for granted that everyone will give unqualified support for their data to be used.
“Young people are generally in favour and can see the benefits, but they understandably want to ensure their data is used ethically and securely, that they have control over how it’s used, and that their views are taken seriously.”
One practical measure to build trust and transparency is to make it clearer to participants how their data are being used and governed, she says. Understanding why data are being used, who may access them, and what safeguards are in place will be important as the use of data in healthcare research continues to expand.
The findings are particularly relevant as Cambridge develops new approaches to using health data and other routinely collected data to improve children’s healthcare. Charlotte’s work contributes to Children and Adolescents Data Resource (CADRE), led by Dr Anna Moore, also from the Department of Psychiatry, which is helping to establish the digital foundations for the new Cambridge Children’s Hospital. Ensuring that children and young people and families are involved in thinking about how data are collected, linked, and used will be an important part of developing data-driven approaches that are trusted and responsive to their needs.
Charlotte added: “For research such as ours, it’s important that we work with patients and members of the public from the outset to understand any concerns they may have and find out what would be meaningful for them. This will help ensure that what we’re doing aligns with their expectation.”
The researchers emphasise that these findings should not be interpreted as representing one uniform view among all underrepresented groups. People’s experiences and perspectives are shaped by their individual circumstances, backgrounds, and previous experiences with healthcare and research.
This research was funded by UKRI Medical Research Council through the Datamind, the Office for Life Sciences and the National Institute for Health and Care Research (NIHR) Mental Health Translational Research Collaboration Mission, hosted by the NIHR Oxford Health Biomedical Research Centre. Additional support was provided by the NIHR Cambridge Biomedical Research Centre and the NIHR Applied Research Collaboration East of England.
Reference
Burdge, C et al. 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. PLOS Digital Health; 15 Oct 2026; DOI: 10.1371/journal.pdig.0001434
PLOS Digital Health
Literature review
People
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
15-Oct-2026