# PRSB Epilepsy Information Standard - Phase 4

**Category:** [Epilepsy12](https://forum.rcpch.tech/c/epilepsy12/7)
**Created:** 2025-09-08 15:53 UTC
**Views:** 9
**Replies:** 2
**URL:** https://forum.rcpch.tech/t/prsb-epilepsy-information-standard-phase-4/594

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## Post #1 by @pacharanero

I have had a notification email from the Professional Records Standards Body (PRSB) about their ongoing work to develop an information standard for Epilepsy. I'm fairly sure that E12-involved people will probably be aware of the work, but just thought I'd flag it in case anyone was not aware of it.

https://theprsb.org/epilepsy-information-standard-phase4/

> [!info] Text of the email from Andy.Wright@theprsb.org
>
> Dear Colleague
> 
> I hope this message finds you well.
> 
> We are pleased to share an update on the Epilepsy Information Standard project, commissioned by NHS England.
> 
> Following the successful completion of Phases 1 to 3 (discovery, user-centred design, and consultation) we are now progressing into Phase 4: the development of the final standard.
> 
> This final phase will focus on delivering a robust, implementable information standard that supports integrated, continuous care for both children and adults with epilepsy. Our key activities in this phase include:
> 
> -   Building the Epilepsy Information Standard into PRSB’s Data Modelling Tool
> -   Engaging expert groups to define cardinality and mandatory recording obligations (MRO)
> -   Defining clinical terminology (SNOMED CT) for the relevant value sets
> -   Consulting with system suppliers to test the feasibility and design for implementation
> -   Submitting an application for an Information Standard Notice (ISN)
> 
> We are continuing to draw on insights from earlier phases, including feedback that emphasised the importance of personalisation, continuity of care, and integration of tools such as epilepsy passports. The standard aims to address both clinical and holistic needs, supporting digital transformation aligned with the NHS England 10-Year Plan.
> 
> Key stakeholders and system suppliers will be contacted over the next few weeks to participate in testing and development of the standard.
> 
> Details of the project can be found at our Epilepsy Information Standard Webpage
> 
> We intend to publish the draft standard on the PRSB website on the 22nd of December, after which we will seek endorsement from your organisation.
> 
> Thank you for your continued support and engagement with this vital project.
> Best regards,
> 
> Andy Wright
> Comms and Engagement Lead
> PRSB 
> Professional Record Standards Body - better records for better care

It may have relevance for the E12 platform in that we would want to try to ensure that data items collected for E12 are in the proposed PRSB Information Standard, where that is feasible.

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## Post #2 by @royi

This is interesting, @pacharanero how do interested parties participate?

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## Post #3 by @pacharanero

Well, on the website linked above there is this line

> If you’d like to find out more about our upcoming consultation, please email us at **[info@theprsb.org](mailto:info@theprsb.org)** or check back soon. Further updates will be published on this page.

So, you could do that, or you could email Andy Wright, whose email was in the first post as well.

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**Canonical:** https://forum.rcpch.tech/t/prsb-epilepsy-information-standard-phase-4/594
**Original content:** https://forum.rcpch.tech/t/prsb-epilepsy-information-standard-phase-4/594