The primary and secondary use of data in healthcare, policymaking, research and innovation depends on data sharing. Data sharing benefits from data standards that describe how data is structured so that multiple users can access and analyse the data. Data standards play a pivotal role in facilitating the reuse of data in healthcare, policymaking, research and innovation. There are many data standards, each targeting a particular need (routine healthcare, observational research, interventional research, etc). To prevent need-specific data silos, data standards must be mappable between each other to allow data from multiple formats to be interpreted accurately; that is, data standards need to be interoperable. Other benefits of data standards include the ability of information technology to intake and manipulate information directly from the source data (machine readability) and the capability to make information Findable, Accessible, Interoperable and Reusable (FAIR).
As the paediatric population (babies, children and adolescents) is an important user of health services, health data standards need to cover data generated during paediatric healthcare, while supporting data use throughout the life of the patient. Similar to the development of medicines, where those studied in children are only a small portion of the whole, data standards development has historically focused on interoperability for adults. There is therefore a risk that some standards may not be suitable or complete enough for use in paediatric healthcare or clinical research. The absence of paediatric data standards would prevent accurate description of disease burden, reduce the impact of benchmarking care and minimise opportunities for combining the results of clinical trials, for example, meta-analysis. The purpose of this editorial is to raise awareness of the importance of including paediatric-specific data element concepts within data standards
Link to view the full article: https://adc.bmj.com/content/early/2025/01/23/archdischild-2024-327931.full
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