Epilepsy12 methodology and data submission

Introduction

Round 4 of the Epilepsy12 audit is comprised of two main audit domains:

• Clinical audit - the epilepsy care provided to children and young people with epilepsy
• Organisational audit (service descriptor) - organisation of paediatric epilepsy services

Health Boards and Trusts can submit clinical and organisational data via the Epilepsy12 data platform.

You can download the full methodology below. This describes each of the domains in detail, sets out the related data collection and reporting timelines and indicates how participating Health Boards and Trusts will be incorporated into the audit and aligned with OPEN UK networks. Please note that the 2023 report (cohort 4 clinical data and 2022 organisational audit) will follow the round 3 methodology.

You can also download the datasets for the two audit components: patient registration and clinical audit forms; and organisational audit forms.

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 was successfully completed and the 2022 annual report published in July 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.

Outlier policy

The Epilepsy12 audit manages outlier identification using the RCPCH detection and management of outlier status policy, which you can download below. This includes the outlier measures, identification and notification processes.

The three epilepsy indicators used for outlier analysis are:

• Epilepsy Specialist Nurse (ESN): The proportion of children and young people diagnosed with epilepsy that were seen by an Epilepsy Specialist Nurse in their first year of care. 
• Tertiary input: the proportion of children and young people diagnosed with epilepsy that had tertiary input in their first year of care. 
• Ascertainment: The proportion of children and young people registered into Epilepsy12 who were verified on the audit data system by their NHS Health Board/Trust. 

Data collection and reporting - key dates

The clinical audit phase is underway and focuses on care provided to patients with a new diagnosis of epilepsy. Clinical audit data entry is prospective, with eligible patients grouped into three cohorts:

The deadline to submit data for Cohort 4 has now passed. We are currently extracting and analysing clinical data from the first year of care records for Cohort 4 patients, as well as organisational data from NHS Health Boards/Trusts. 

Thank you for your participation in the audit. Registration of new patients with a first paediatric assessment between 1 December 2021 and 30 November 2022 (Cohort 5) remains open. 

Submit to the Epilepsy12 data platform

Publications

The first output from the audit was the National Organisational Audit Report 2018, which examines Trust/Local Health Board epilepsy service configuration as of April 2018. 100% of participating Trusts/Local Health Boards submitted data for the report.

Within Round 3 of Epilepsy12, the first clinical audit report for data collected for patients within Cohort 1 was published in September 2020, and the second national report for Cohort 2 was published in July 2021. The Cohort 3 national report was published in July 2022.

In 2023, we plan to publish the national report for Round 4, Cohort 4. We are also introducing a quarterly report through on an online dashboard. Our full 2023 reporting plan is available below:

National Data Opt Out exemption (England only)

The Secretary of State for Health and Social Care, having considered the advice from the Health Research Authority Confidentiality Advisory Group, have granted Epilepsy12 an exemption to the National Data Opt-Out (NDO). Epilepsy12 were granted this exemption because applying the National Opt-Out would introduce biases to the data and make it difficult to monitor care safety and quality at Trust level, risking quality of care and patient safety.  

• Healthcare providers no longer need to screen patients again the national opt out list prior to data entry as the NDO does not apply to Epilepsy12 and these patient data are not subject to the opt out. 
• However, patients can still opt out of Epilepsy12 separate to the NDO – for more information on how Epilepsy12 uses patient data and how patients can withdraw from the audit, please visit the patient and parent resources page. 
• You can also view further guidance on compliance with the National data opt out and guidance for health and care staff from NHS Digital.

Information governance

The aim of Epilepsy12 is to help to improve the standard of care for children and young people with epilepsies and to be able to do this the audit will collect and process patient identifiable data.

By collecting and processing such information the audit is able to highlight areas where hospitals and clinics are doing well, and also identify areas in which they need to improve.

Privacy

The RCPCH and Epilepsy12 project team members take their responsibilities for maintaining the security of patient identifiable data extremely seriously. You can download the full Epilepsy12 privacy notice (in English and Welsh) below. This addresses the following questions:

• What is Epilepsy12?
• Why are hospitals and clinics taking part in Epilepsy12?
• What information does Epilepsy12 collect?
• What private information about you does Epilepsy12 collect?
• What happens to the private information?
• How long do you keep my personal information for?
• Why didn't anyone ask me if they could collect my personal information for Epilepsy12?
• What if I do not want Epilepsy12 to collect my personal information?
• Can I get a copy of any personal information that Epilepsy12 has collected about me?
• What other rights do I have?
• Who should I contact if I need more information?

Information for patients

Epilepsy12 has provided each participating Health Board and Trust with Round 4 flyers which can be displayed in clinic areas and shared with patients, parents and carers. These materials introduce the audit and signpost the full privacy notice. You can download the flyers (in English and Welsh) below.

The Epilepsy12 team worked with the Youth Advocates to produce a patient and parent guide to the audit. This useful resource for patients and families describes the care provided by paediatric epilepsy services in England and Wales, including their improvement strategies.

Processing data

Under GDPR the following legal bases apply to Epilepsy12 for processing personal data: processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.

(Article 6 (1) (e) and (Article 9 (2) (i) processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy.

Under the Common Law Duty of Confidentiality (CLDC), Epilepsy12, as delivered by the RCPCH, uses Section 251 as its legal basis to meet the CLDC.

Epilepsy12 currently has section 251 approval to collect patient identifiable data without explicit patient consent (reference: 17/CAG/0184). You can download the approval letter below.

More information on the section 251 approval process is available on the Confidentiality Advisory Group pages of the NHS Health Research Authority website.

How to videos

The following videos demonstrate how users can submit organisational and clinical data onto the Epilepsy12 platform. These can be used alongside the dataset and user guide for data entry - these can be downloaded below. Please note these videos were created for the previous Round 3, and so will slightly differ from what is currently on the data platform.

Organisational audit

• Organisational audit for Epilepsy12 round 3 - how to complete

Clinical audit

Participating Health Boards and Trusts across England and Wales were 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.

This video demonstrates how to registers patients via EEG services:

• How to register Epilepsy12 patients via EEG services

The Epilepsy12 team hosted a two part "how to" live webinar designed to clarify aspects of the audit methodology and data platform functionality. These can be viewed in full again below. During the webinars, the project clinical lead, Dr Colin Dunkley, and members of the project team guide people following online through various Epilepsy12 topics:

• Epilepsy12 ''How to" Webinar Part 1
  • 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
• Epilepsy12 ''How to" Webinar Part 2
  • 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

NHS England Quality Accounts List

Epilepsy12 is one of the national audits within the National Clinical Audit and Patient Outcomes Programme (NCAPOP) which NHS England advises Trusts to prioritise for participation and inclusion in the NHS England Quality Accounts list for 2021-22 and 2022-23.

The information below may be used to support Trusts in England for their Trust Quality Account submission - 2022-23 audit:

• Annual data submission deadline – 10 January 2023 (for clinical audit patient ‘Cohort 4’ & 2022 organisational audit)
• Participation - paediatric services within Health Boards and Trusts in England and Wales
• Coverage - Patients with a paediatric assessment for a first suspected seizure episode (or episodes), followed for 12 months of subsequent care
• Number of patients entered - Please contact the clinical lead at the service - we cannot publish numbers until after the national report release.
• National report publication date - Summer 2023

Contact

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