Epilepsy Information Standard discovery report


Epilepsy12, the national clinical audit of seizures and epilepsies in children and young people for England and Wales, is undertaken by the Royal College of Paediatrics and Child Health (RCPCH). They have identified the need for an agreed epilepsy information standard to facilitate sharing of data relating to a patient’s epilepsy care between health and care settings, and for secondary use such as the national clinical audit. As part of this work, it was also recognised that any information standard must meet the requirements of adults with epilepsy. 

PRSB undertook a piece of discovery work to identify the use cases for an epilepsy standard, what standards already exist and what further standards are needed to support epilepsy care, and set out a plan for developing standard(s) to address these needs.  

Our discovery work around epilepsy was funded by the RCPCH and we would like to thank them for their support and taking this important work forward.



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

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



 The key objectives are to: 

  • Agree a consensus definition of epilepsy data items 
  • Develop an information standard defining epilepsy data items 
  • Facilitate reduction in the inconsistency of data through a standard that will enable interoperability 



Epilepsy SMI Information Standard 

The draft standard should undergo full and extensive consultation to gain consensus from all stakeholders on the content of the information model. System suppliers should be engaged from the outset. 

Comprehensive implementation support should be developed to facilitate successful implementation of the standard. 

NHS England priorities 

Given the health inequalities, the burden of comorbidities and the range of pathways and settings which a person with epilepsy might have to endure, together with the potential savings of £12.1 million identified by the NHS rightcare toolkit, NHSE might like to consider the opportunity to invest in a pilot implementation as a ‘proof of concept’ for this long term condition, in a similar fashion to diabetes. 

Charitable organisations 

Given the outstanding support and resources provided by charitable organisations, it appears there may be an opportunity to provide even more support by reducing duplication and freeing up resource. This might be done by working under the umbrella of one organisation, such as the Neurological Alliance, to set up an overarching board to agree allocation of work to be undertaken between parties. 

Supplier engagement 

Suppliers should be engaged throughout the process of development of the standard. 


View the discovery report

Discovery Report

Publication date: August 2023

Discovery Report – Epilepsy Information Standard