The Invisibility of Children in Data Systems

In order to assess the state of health of Europe’s children, or to appraise the systems and models of healthcare delivery, data about children are essential, with as much precision and accuracy as possible by small group characteristic. Unfortunately, the experience of the Models of Child Health Appraised (MOCHA) project and its scientists shows that this ideal is seldom met, and thus the accuracy of appraisal or planning work is compromised. In the project, we explored the data collected on children by a number of databases used in Europe and globally, to find that although the four quinquennial age bands are common, it is impossible to represent children aged 0–17 years as a legally defined group in statistical analysis. Adolescents, in particular, are the most invisible age group despite this being a time of life when they are rapidly changing and facing increasing challenges. In terms of measurement and monitoring, there is little progress from work of nearly two decades ago that recommended an information system, and no focus on the creation of a policy and ethical framework to allow collaborative analysis of the rich anonymised databases that hold real-world people-based data. In respect of data systems and surveillance, nearly all systems in European society pay lip service to the importance of children, but do not accommodate them in a practical and statistical sense.