Young People Help Shape New Guidance on When It’s OK to Link Children’s Data
A new set of principles developed with young people is helping researchers understand when it is appropriate to link children’s data for research.
Published on 12 January 2026, the guidance was led by UCL researchers working in partnership with Young Persons’ Advisory Groups (YPAGs) from Great Ormond Street Hospital (GOSH) and Liverpool (GenerationR).
During 2025, young people collaborated with the research team to share their views on data linkage — an increasingly important issue as large amounts of administrative data are routinely collected. These datasets, which include information about health conditions, treatments, education and even environmental factors, are often linked to create rich research resources such as ECHILD and KEHC, helping to improve understanding of the factors that shape young people’s health and wellbeing.
Because these data are sensitive, strict ethical and legal controls determine when and how they may be used. Researchers must seek approval from ethics committees, confidentiality advisors and data guardians, all of whom want reassurance that young people’s rights, privacy and views are fully considered.
The new guidance brings together common themes raised by the advisory groups, offering a clear, youth‑driven reference for researchers, decision‑makers and others working with linked administrative data. Its aim is to ensure that young people’s voices consistently shape decisions about how their data are used.
Read the full article on the BRC website here: