Epilepsy Information Standard: Phase 3

Epilepsy Information Standard: Phase 3 report

Epilepsy is the most common significant long-term neurological condition of childhood and affects an estimated 112,000 children and young people in the UK. The Royal College of Paediatrics and Child Health (RCPCH) commissioned the PRSB to explore the development of an information record standard for epilepsy. The focus of Phase 3 was to consult on the draft information record standard.

Key objectives

  • agree a consensus definition of epilepsy data items
  • facilitate reduction in the inconsistency of data
  • develop an information standard defining epilepsy data items


Information record standard consultation objectives:

  • update use cases as required
  • agree issues to be tested in consultation
  • refine and iterate the model through consultation
  • log any points for inclusion in implementation guidance, safety case and hazard log.

On this page

Documentation

Phase 3: Interim report
Phase 3: Survey report
Phase 2: Draft information model

Key findings and recommendations

The consultation revealed widespread support for the Epilepsy Information Standard (EIS) to integrate both structured and free-text data to reflect complex clinical scenarios and maintain usability. 

A key recommendation to streamline processes is to incorporate automation and pre-populated fields from Electronic Patient Records (EPRs), and to allow structured input (e.g., SNOMED codes) alongside optional free-text fields. 

Workshops with clinicians and service users emphasised the importance of personalisation and continuity of care. Recommendations include updating the data model to:

  • Record multiple perspectives on seizure episodes

  • Integrate patient-used documentation (e.g., epilepsy passports),

  • Capture seizure clusters distinctly,

  • Include fertility impacts and adherence monitoring,

  • Support the transition between paediatric and adult care

  • Address holistic needs such as mental health, mood, and alternative therapies.

Young boy looking into camera

Resources

Phase 3: Interim report
Find out about the project in more detail in our discovery report.

Phase 3: Survey report
Find out about the project in more detail in our discovery report.

Epilepsy 12: Find out more
RCPCH work to improve the quality of care for children and young people with seizures and epilepsies in England and Wales.