Epilepsy is a long-term neurological condition that requires coordinated, high-quality care across multiple services and throughout a person’s life. In England and Wales, information about epilepsy is not recorded or shared consistently across health and care systems. This limits access to accurate and timely information for clinicians, places an unnecessary burden on people with epilepsy and their families to repeatedly provide the same details, and reduces the ability to use routine data to improve services, support national audit, and enable research.

Evidence from the Epilepsy12* national audit has repeatedly highlighted variation in data quality, inconsistent recording of diagnoses, and poor interoperability between systems, all of which affect patient safety and continuity of care.

(*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.)

The Epilepsy Information Standard has been developed to address these challenges by setting out a nationally agreed, structured approach to recording and sharing epilepsy related information. By defining a common set of information items supported by consistent clinical terminology, the standard aims to improve communication between professionals, support person centred care, and enable safer, more coordinated management of epilepsy across all care settings.

NHS England commissioned the PRSB to explore the development of an information record standard for epilepsy. The overall aim of the standard is to support the integrated and continuous care of epilepsy across settings by developing epilepsy data items.

This work will also contribute to the delivery of the NHS England 10-Year Plan by supporting national strategic priorities for digital transformation and could enable the development of a Single Patient Record.

The first three phases of this project — discovery, user-centred design, and consultation on the draft information record standard — were completed prior to the full standard development. The following outputs from these phases are available to view in the associated media section of this page.

The scope of this standard covers both children and adults with epilepsy. Scope includes data relating to epilepsy which:

• might be required at point of care
• might be shared between different settings
• a patient might wish to share
• might be required to support national audit and approved research purposes
• might be required to support care planning.

This standard has been published in draft for review and has now entered the endorsement phase managed by the PRSB.