Epilepsy12 audit - submit data for 2018-2021

The current round of Epilepsy12 comprises two main data processing and reporting components - the organisational audit and the clinical audit. This page provides user guides, instructional videos and webinars in support of these two components.

COVID-19 update

Despite the unprecedented challenges of COVID-19 and the temporary suspension of audit entry, the Round 3 Epilepsy12 national annual reports for Cohort 1 and Cohort 2 were successfully published in September 2020 and July 2021 respectively. 

In May 2021, HQIP updated their guidance to mandate a restart of NCAPOP data collection (which includes Epilepsy12) for England. The guidance is available online. Cohort 3 data collection is underway and will be published in Summer 2022.  

We would like to thank services for their continued efforts to both provide care to children and young people with epilepsies throughout the pandemic, and work to improve this care by participating in the audit. 

National Data Opt Out implementation (England only)

From 31 March 2022 all healthcare providers in England that participate in the Epilepsy12 audit must comply with the National Data Opt Out. This has been extended from 30 September 2021.

NHSX and NHS Digital have written a letter explaining this opt out deadline extension - download letter below.

  • Patient data entered into the Epilepsy12 audit is subject to the Opt Out.
  • Each patient’s NHS Number must be screened against the National Opt Out list at NHS Digital prior to any of their data being entered onto the Epilepsy12 platform.
  • Please check with your Trust's Information Governance team for the local arrangements by which the screen should take place.
  • You can also view further guidance on compliance with the National data opt out and guidance for health and care staff from NHS Digital.

Organisational audit and Trust profile

Data collection for the 2021 organisational audit component is now open and the submission deadline is 11th January 2022. The dataset and user guide for data entry can be found in the download list below. 

In this video, the clinical lead, Dr Colin Dunkley, introduces this phase.

'How to' videos - organisational audit

Clinical audit

You can download below the Introduction to the clinical audit phase - this summarises the aims and processes that underpin this phase of the audit. The data submission deadline for the Round 3 Cohort 3 clinical audit component is 11th January 2022

Participating Health Boards and Trusts across England and Wales are now able to identify and register eligible patients onto the audit data platform and record details of their First Paediatric Assessment and the First Year of Care that follows that initial assessment.

EEG services play a key role in the audit as they can also register patients onto the data platform following a referral for a first EEG after a first paediatric assessment.  

In this video, Kelly St Pier, Neurophysiology Clinical Scientist and Immediate Past Chair of the Association of Neurophysiological Scientists (ANS), explains how EEG services are involved in the audit.

And, this video shows you how to register patients via EEG Services.

'How to' webinars

On 20 February 2019, we hosted the second part of what we hope will be a series of live webinars designed to help clarify aspects of the audit methodology and data platform functionality.

The webinar can be viewed in full again here:

During this initial webinar the project clinical lead, Dr Colin Dunkley, and members of the project team, guided people following online through the following topics:

  • Recap of clinical audit aims
  • Update on activity so far
  • Involving your team in data entry
  • Cohorts – where do they fit in?
  • Using the clinical case management screen
  • Introduction to the Overview dashboard
  • Recap of First Paediatric Assessment & First Year of Care forms
  • Transferring patients from one Trust to another
  • Platform reporting functions– what are they and how to use them
  • NHS England & NHS Wales monitoring and regulatory processes

On 24 September 2018, we hosted the first of what we hope will be a series of live webinars designed to help clarify aspects of the audit methodology and data platform functionality.

The webinar can be viewed in full again here:

During this initial webinar the project clinical lead, Dr Colin Dunkley, and members of the project team, guided people following online through the following topics:

  • patient eligibility criteria
  • consent
  • user types and permissions
  • how to register a patient (both as an EEG user and as a Health Board/Trust user)
  • how to verify a patient as a Health Board/Trust user
  • how to add and complete the First Paediatric Assessment form
  • how to add and complete the First Year of Care form
  • how to access and use Individual Patient timeline and Care Planning Reports

Contact

The Epilepsy12 project team members are available to respond to any related queries at: epilepsy12@rcpch.ac.uk or on: 020 7092 6170 / 6161 / 6056 / 6157.

Submit your data