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
The most recent phase of the project (Phase 3) focused on consulting on the draft Epilepsy Information Standard. This included:
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Updating use cases
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Agreeing on key issues to test
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Iteratively refining the model
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Logging key points for future implementation guidance and safety assurance
Consultation feedback showed strong support for integrating both structured and free-text data to reflect complex clinical scenarios while maintaining usability. Clinicians and service users highlighted the need for personalisation and continuity of care. Key recommendations included:
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Recording multiple perspectives on seizure episodes
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Integrating tools used by patients, such as epilepsy passports
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Capturing seizure clusters distinctly
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Including fertility and adherence information
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Supporting transition between paediatric and adult services
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Addressing holistic needs such as mental health, mood, and use of alternative therapies
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 the consultations carried out in the previous phase and will help ensure the standard is practical and implementable across care settings.
If you’d like to find out more about our upcoming consultation, please email us at info@theprsb.org or check back soon. Further updates will be published on this page.