Continuity of care for children builds on focal points such as home, school, family physician, and emergency/hospital caregivers. In each point, medical data are recorded. Transfer of care may face poor continuity of facts. Children cannot recount their clinical history as well as adults and are legally dependent on their guardians.
We aimed to study if the International Patient Summary (IPS) standard comprising a minimal and non-exhaustive specialty-agnostic, condition-independent, but clinically-relevant collection of clinical and contextual information , can be used to integrate health data for children.
We described pathways identifying main components or care covering preventive, family, supportive, and acute care. Data were retrieved from large collaborative studies and guidelines. We explored the IPS as a window to the child’s integrated data across their health journey.
Electronic health record (EHRs) exist at focal points of the patient journey (e.g. primary care records, ED records) but often information transfer was inefficient. Additional resources were accessible to ), health policy makers or researchers and only few to both caregivers and patients. Data were influenced by variability of health care structures. Their quality for broader aims was questionable.
The IPS could link health data at transition points for prompt feedback, if complemented with rules on what data to use and how to present them across the pathway, empowering patients to access and amend IPS data contributing to data quality and accuracy. Simulation events can help advance toward fast, safe care, better patient experience, while facilitating research use.