A comprehensive review led by researchers at the University of Cambridge has revealed that children and young people generally favour the use of their health data for research, provided robust safeguards, transparency, and a greater say in decision-making processes are in place. The findings, published in PLOS Digital Health, highlight a conditional but broad support for leveraging 'big data' to advance healthcare and scientific knowledge.
The study, which systematically reviewed existing evidence from over 6,200 participants, including more than 4,700 children and young people and nearly 1,500 parents and carers, indicated that participants were most comfortable sharing data when managed by trusted public organisations such as health services and universities. Concerns were raised about data being sold to commercial companies and opaque governance structures.
A key finding was the desire among young people to have increased involvement in decisions regarding their data as they mature. This suggests a shift towards greater autonomy in consent and data usage, moving beyond decisions solely made by parents or institutions. Researchers emphasised that while participants are generally in favour, they understandably want assurance that their data is used ethically and securely.
The review's lead author, Charlotte Burdge, a PhD student at the University of Cambridge's Department of Psychiatry, stated that 'Big data' holds significant potential for health insights, but unqualified support should not be assumed. She stressed the importance of clear communication regarding data usage, access, and safeguards to build trust as data-driven approaches in healthcare research expand.
These findings are particularly pertinent as Cambridge develops new strategies for utilising health data, contributing to initiatives like the Children and Adolescents Data Resource (CADRE), which supports the digital foundations for the new Cambridge Children's Hospital. Ensuring public involvement from the outset is crucial for developing trusted and responsive data-driven healthcare solutions.
