Epilepsy12 audit - submit data for 2018-2020

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. Data collection for the 2019 organisational audit and Cohort 1 clinical audit is now closed.

Update regarding COVID-19

The COVID-19 pandemic will place immense pressure on Epilepsy services in general and routine epilepsy data collection in particular. It is a time of much uncertainty and many of you will be working out how we can manage with the pandemic while maintaining and adapting our services for children with demanding long term conditions like epilepsy. 

HQIP guidance to NCAPOP providers issued on Friday 20 March states that the NCAPOP (which includes Epilepsy 12) mandated data collection has been suspended, with confirmation by NHS E/I being imminent. The guidance is available online.  We remain committed to publishing our Epilepsy12 findings based on cohort 1 later this year.

In the meantime, if you wish to continue with prospective data submission then please do. For some services this will help them remain sighted to the epilepsy population as well as support the ongoing care of the children. The Epilepsy12 data entry platform therefore remains open and you and your team may enter as much data as you wish about your patients. However we understand that this may not be possible in the circumstances.  

Most, if not all, services are likely to be affected in the coming year and we want to assure you that our future reporting of audit results will be highly sensitive to this. This is an unprecedented situation. We will be guided by our multidisciplinary Board and Methodology groups about how we can communicate future findings fairly, accounting for the pressures services are likely to be under.
 

National Data Opt Out Implementation (England only)

  • From 30 September 2020 all healthcare providers in England that participate in the Epilepsy12 audit must comply with the National Data Opt Out
  • Patient data entered into the Epilepsy12 audit is subject to the Opt Out
  • Each patient’s NHS Numbers 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

Organisational audit and Trust profile

Data collection for the 2019 organisational audit component is now open for completion by Epilepsy12 Designated Leads on the data platform. Data entry for the 2019 organisational audit closed on 31 December 2019. The dataset and user guide for data entry can be found within the download list displayed further down the page.

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. Data submission for the Cohort 1 clinical audit closed on 31 December 2019. Data Submission for Cohort 2 and Cohort 3 for the clinical audit is currently underway.  

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 6056/6157/6170/6161.

Submit your data