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Information and communication technologies can transform how services can be and are delivered as has already happened in other arenas, such as civil aviation, financial services and retailing. Most modern health care is heavily dependent on e-health, including record keeping, targeted information sharing and digital diagnostic and imaging techniques. However, there remains little scientific knowledge base for optimal system content and function in primary health care, particularly for children. Models of Child Health Appraised (MOCHA) aimed to establish the current e-health situation in children’s primary care services. Electronic health records (EHRs) are in regular use in much of northern and western Europe and in some newer European Union Member States, but other countries lag behind. MOCHA investigated the use of unique identifiers, the use of case-based public health EHRs and the capability of record linkage, linkage of information with school health data and monitoring of social media influences, such as health websites and health apps. A widespread lack of standards underlined a lack of research enquiry into this issue in terms of children’s health data and health knowledge. Health websites and apps are a growing area of healthcare delivery, but there is a worrying lack of safeguards in place. The challenge for policy-makers and practitioners is to be aware and to lead on the innovative harnessing of new technologies, while protecting child users against new harms.

The child is at the centre of all Models of Child Health Appraised research and indeed all primary care delivery for children. Appraising models of primary care for children is incomplete without ensuring that experiences of primary care, design, treatment, management and outcomes are optimal for the child. However, the principle of child centricity is not implicit in many healthcare systems and in many aspects of life, yet it is extremely important for optimal child health service design and child health. By exploring the changing concept of ‘childhood’, we understand better the emergence of the current attitude towards children and their role in today’s Europe and the evolution of child rights. Understanding child centricity, and the role of agents acting on behalf of the child, allows us to identify features of children’s primary care systems that uphold the rights of a child to optimum health. This is placed against the legal commitments made by the countries of the European Union and European Economic Area to ensure that children’s rights are respected.

Whilst nations have overall responsibility for policies to protect and serve their populations, in many countries, health policy and policies for children are delegated to regions or other local administrations, which make it a challenging subject to explore at a national level. We sought to establish which countries had specific strategies for child and adolescent health care, and whether primary care, social care and the school–healthcare interface was described and planned for, within any policies that exist. In addition, we established the extent to which a child health strategy and meaningful reference to children’s records and care delivery exist in an e-health context. Of concern in the Models of Child Health Appraised (MOCHA) context is that 40% of European Union and European Economic Area countries had reported no health strategy for children, and more than a half had no reference to supporting delivery of children’s health in their e-health strategy.

We investigated the differences in ownership and leadership of children’s policy, which was a range of ministry input (health, education, labour, welfare or ministries of youth and family); as well as cross-ministerial involvement. In terms of national policy planning and provider planning, we investigated the level of discussion, consultation and interaction between national healthcare bodies (including insurance bodies), providers and the public in policy implementation. The MOCHA project scrutinised the way countries aim to harness the latest technologies by means of e-health strategies, to support health services for children, and found that some had no explicit plans whereas a few were implementing significant innovation. Given that children are a key sector of the population, who by very nature have a need to rely on government and formally governed services for their well-being in the years when they cannot themselves seek or advocate for services, our findings are particularly worrying.

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.