Young People Back Health Data Research but Demand Stronger Safeguards

Children and young people are broadly willing to let their health data be used in research that could improve lives, but that willingness comes with conditions, according to a systematic review led by researchers at the University of Cambridge. The study, published in PLOS Digital Health, brought together evidence capturing 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, often described as big data, in children’s healthcare research. The central message is nuanced: participants could clearly see the potential of data-driven research to advance medicine, yet they wanted strong safeguards, transparency about how their information is handled, and a genuine voice in decisions about its use. As health systems worldwide move toward ever-larger linked datasets, the findings offer a timely reminder that public acceptance of data reuse is not automatic and must be earned through ethical conduct, trustworthy governance, and meaningful involvement of the people whose records are being analysed.

The scale and ambition of modern health data research are difficult to overstate. Large-scale datasets drawn from electronic health records, administrative systems, disease registries, and digital technologies are transforming how researchers understand disease patterns, treatment outcomes, and population health trends. Instead of studying small groups of patients in isolation, scientists can now follow entire populations over time, spotting signals that would be invisible in conventional clinical trials. For children’s healthcare in particular, where rare conditions and long-term developmental outcomes make traditional studies slow and expensive, routinely collected data promises insights that could shape care for generations. Yet the same features that make big data powerful also raise concerns. Data collected for one purpose are often routinely reused beyond their original context, and critics have pointed to cases where information has been sold to commercial companies. Governance structures can be opaque, and participants are typically far removed, both physically and institutionally, from the researchers who analyse their information, creating a distance that can breed suspicion.

Much of what is known about public attitudes to health data sharing comes from studies of general adult populations, which have found broad but conditional support, particularly where there is perceived public benefit and trust in the organisations involved. Evidence specifically exploring the views of children and young people, especially those from groups underrepresented in research, has been far scarcer. That gap matters, because children’s data are used in research with decisions made on their behalf, and because today’s young people will become tomorrow’s adult participants in an increasingly data-saturated research environment. To address the gap, researchers from the Department of Psychiatry at the University of Cambridge carried out a systematic review of both qualitative and quantitative evidence, allowing them to combine findings from different types of research and identify common themes across the evidence base. The review included 17 studies involving 6,261 participants in total, including at least 4,710 children and young people and 1,443 parents and carers.

The overall pattern of attitudes was encouraging for the research community. Children and young people, along with their parents and carers, were broadly supportive of using health data for research where there was a clear potential benefit. Three kinds of benefit stood out in the evidence: improving healthcare directly, advancing scientific knowledge, and supporting other people with similar experiences of illness. In other words, participants were not opposed in principle to their records contributing to a larger good; they could imagine their own data helping a child they had never met receive better treatment. However, the review is emphatic that this support was conditional rather than unconditional. Participants wanted research to be carried out ethically, by trustworthy organisations, and with appropriate safeguards and transparency around how their data are used. Where those conditions were absent or unclear, support weakened considerably.

The conditions participants attached to their support reveal a sophisticated understanding of the risks involved. Respondents wanted strong protections to ensure their information is used safely and fairly, and they were concerned about the potential loss of privacy and the possibility of being identified even when data are supposedly anonymised. This concern reflects a technical reality: as datasets grow larger and more detailed, and as they are linked with other sources of information, the risk of re-identification from supposedly de-identified records increases. Participants were also worried about the misuse of data by organisations, particularly commercial companies. Trust emerged as a decisive factor in shaping attitudes. 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, and markedly less comfortable when private companies were involved in the chain of custody. For anyone designing data infrastructure for paediatric research, the implication is clear: who holds the data, and under what governance arrangements, matters as much to young people as what the data will be used for.

Perhaps the most striking finding concerned agency. Young people wanted a greater say in decisions about their data as they grow older. Some studies suggested that they should become increasingly involved in decisions about consent and data use as they mature, rather than having those decisions made entirely by parents or institutions on their behalf. This developmental perspective challenges the conventional binary of parental consent and child assent, pointing instead toward a graduated model in which young people’s decision-making role expands with their maturity. It also aligns with broader movements in paediatric medicine toward recognising children as active participants in their own care rather than passive subjects. Charlotte Burdge, a PhD student in the Department of Psychiatry at the University of Cambridge, who led the review, said that big data has the potential to unlock valuable insights into health and disease, but that the review shows we should not take for granted that everyone will give unqualified support for their data to be used. Young people, she noted, 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 is used, and that their views are taken seriously.

The review also points toward practical measures that could build the trust and transparency young people say they need. Burdge suggests that making it clearer to participants how their data are being used and governed is one such measure. 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. In practice, this could mean plain-language explanations of data flows, accessible governance information, and mechanisms through which participants can ask questions and raise concerns. The findings arrive at a particularly relevant moment for Cambridge itself, which is developing new approaches to using health data and other routinely collected information to improve children’s healthcare. Burdge’s work contributes to the Children and Adolescents Data Resource, known as 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, young people, and families are involved in thinking about how data are collected, linked, and used is intended to be an integral part of developing data-driven approaches that are trusted and responsive to their needs.

Burdge also emphasised the importance of early engagement. For research such as ours, she said, it is 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, adding that this will help ensure that what researchers are doing aligns with public expectations. The researchers are careful to note, however, that their 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 encounters with healthcare and research. A young person who has spent years in and out of hospital may view data sharing very differently from one with little contact with health services, and communities with historical reasons for distrusting medical institutions may need different forms of assurance. Treating children and young people as a single homogeneous bloc of opinion would itself undermine the review’s core message about the importance of listening to individual voices.

The research was funded by the UKRI Medical Research Council through Datamind, the Office for Life Sciences, and the National Institute for Health and Care Research Mental Health Translational Research Collaboration Mission, hosted by the NIHR Oxford Health Biomedical Research Centre, with additional support from the NIHR Cambridge Biomedical Research Centre and the NIHR Applied Research Collaboration East of England. The review, published under the title Perceptions, attitudes, and concerns of underrepresented groups regarding the use of big data in children and young people’s healthcare research, arrives as governments and health systems invest heavily in data infrastructure, from national secure data environments to hospital-scale platforms linking genomic, clinical, and administrative records. For the architects of these systems, the Cambridge findings offer both reassurance and a warning. Reassurance, because the next generation appears genuinely enthusiastic about the promise of data-driven medicine and can articulate its benefits with clarity. Warning, because that enthusiasm is contingent, and it can be lost. Young people are asking not to be excluded from the data revolution, but to be included in its governance, with safeguards they can see, organisations they can trust, and a seat at the table that grows as they do.

Subject of Research: Children's and young people's attitudes toward the use of big health data in healthcare research

Article Title: Children and young people broadly support health data research – but want safeguards

Article References: Children and young people broadly support health data research – but want safeguards. (n.d.). Original publication

Image Credits: AI Generated

DOI: Not provided

Keywords: health data, big data, children, young people, systematic review, data privacy, consent, public trust, healthcare research, University of Cambridge, PLOS Digital Health, data governance