Rigby, M, Deshpande, S, Luzi, D, Pecoraro, F, Tamburis, O, Rocco, I, Corso, B, Minicuci, N, Liyanage, H, Hoang, U, Ferrerira, F, de Lusignan, S, MacPepple, E and Gage, H (2019) The Invisibility of Children in Data Systems. In: Issues and Opportunities in Primary Health Care for Children in Europe. Emerald. ISBN 978-1-78973-351-8

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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.

Item Type: Book Section
Additional Information: Copyright © 2019 European Commission License This chapter is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this chapter (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at http://creativecommons.org/licences/by/4.0/legalcode
Uncontrolled Keywords: data; indicators; child health; primary care; database; children; medical record system; computerised
Subjects: H Social Sciences > H Social Sciences (General)
Divisions: Faculty of Humanities and Social Sciences > School of Social Science and Public Policy
Depositing User: Symplectic
Date Deposited: 03 Sep 2019 14:53
Last Modified: 06 Sep 2019 13:30
URI: https://eprints.keele.ac.uk/id/eprint/6763

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