Epilepsy Information Standard
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.
Epilepsy12 seeks to help improve the standard of care for children and young people with the condition in England and Wales. To do this, the audit collects and processes patient data. This information is used by the audit to highlight areas where services are doing well, and also identify areas where they need to improve. Whilst the audit is undertaken by RCPCH, it is also recognised that any information standard must also meet the requirements of adults with epilepsy.
On this page
About the project
NHS England commissioned the PRSB to explore the development of an information record standard for epilepsy.
The first three phases of the project — discovery, user-centred design, and consultation on the draft information record standard — have now been completed. The following outputs from these phases are available to view:
We have now been commissioned to complete phase 4 of the project, which will focus on developing the final standard.
Aim and objectives
The overall aim of the project is to support the integrated and continuous care of epilepsy across settings by developing an information standard for 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 key objectives are to:
- Develop an information standard (clinical record specification)
- Facilitate reduction in the inconsistency of data through a standard that will enable interoperability.
The objectives of the standard development phase are to:
- Build the Epilepsy Information Standard into PRSB’s Data Modelling Tool
- Engage an expert group in defining cardinality and MRO
- Define clinical terminology (SNOMED CT) for relevant value sets
- Conduct consultations with system suppliers to test the design and feasibility of implementation of the Epilepsy Information Standard
- Apply for an Information Standard Notice (ISN).
Scope
The scope of the project 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.
Consultation webinars
As part of Phase 4, we will be consulting with system suppliers to test the feasibility and design of the proposed Epilepsy Information Standard. This builds on consultations carried out in the previous phase and will help ensure the standard is practical and implementable across care settings.
PRSB will be hosting a series of webinars in October and November 2025 to support this work, starting with the first session on Tuesday, 21 October, 14:00–16:00 GMT.
The webinar will gather supplier feedback on the draft standard model, discuss implementation considerations, and ensure alignment with existing systems and interoperability frameworks.
Our aim is to work collaboratively with suppliers to refine the standard and support its practical adoption across health and care environments.
If you or a colleague are able to attend, please use the button below to register.