Epilepsy12 methodology and data submission

Update: You can now submit cohort 8 data. Data entry for cohort 7 has ended.

• Access the data platform for cohort 8
• Download our flyer about the new platform
• Watch recording of a webinar about the new platform (YouTube)
• Watch a video about data entry (YouTube)

Submit cohort 8 data

Introduction

The Epilepsy12 audit comprises two main audit domains:

• Clinical audit - the epilepsy care provided to children and young people with a new diagnosis of epilepsy during the first 12 months following a first paediatric assessment
• Organisational audit (service descriptor) - organisation of paediatric epilepsy services

Download the full methodology: 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 and NHS England regions.

Download the datasets for the two audit components: patient registration and clinical audit forms and organisational audit forms.

Read the 2018-2022 (round 3) methodology and datasets

Download our guidance and flyer on the data collection platform at bottom of page (launched as of cohort 6,2025) 

For patients and parents

The Epilepsy12 team worked with the Youth Advocates to produce a Patient and Parent Guide and Young Person and Parent leaflet to the audit. This useful resource for patients and families describes care provided by paediatric epilepsy services in England and Wales, including their improvement strategies.

Cohort 8 data entry

This video is a demo of the data collection platform:

You can also watch a longer webinar from May 2024 (YouTube).

Please take a look at the platform guidance if you have any difficulty. We welcome feedback on the platform and are open to suggestions for how it can be improved. Please complete the feedback form.

Our methodology and datasets have been updated with the launch of the new platform, but our key performance indicators have not changed. You can download the full methodology and datasets below

Submit cohort 8 data

How has data entry changed?

You will find that the data entry process has changed for Cohort 6 in order to reduce the time and effort associated with submitting data to the Epilepsy12 audit.

• You only need to enter patients with an epilepsy diagnosis. You will no longer have to enter data for every patient with a first paediatric assessment for a paroxysmal episode unless they have a new diagnosis of epilepsy. The full eligibility criteria is outlined below. If you find a patient who is not eligible, you can easily delete them by following the platform guidance.
• Registering patients is now easier. We have replaced the registration and verification forms with a concise form asking for the patient's demographic details. Once completed, you can immediately begin entering data into the patient record.
• There's no need to lock and submit patient records. All completed records will be entered into the audit, regardless of if they have been locked. However, the option to lock records remains available, should that make it easier to monitor your progress through the audit. You can unlock locked records without having to contact the team.
• There is no separate access for EEG users. EEG teams can still add patients to the audit, but there is no separate user type.

Please take a look at the platform guidance if you have any difficulty

What are the benefits of the new platform?

This new platform has been designed with our users in mind. We have made substantial changes to improve the usability and utility of the platform.

• Focused data collection. We have reduced the number of questions in our dataset and removed the registration and verification forms, while still capturing the necessary information for assessing the quality of clinical care provided to children and young people with epilepsy. The new dataset is available below.
• Sub-Trust 'Organisation'-level reporting. Health Boards and Trusts may have multiple paediatric services within them, meaning it was difficult to interpret and act on reports. You can now enter data at the organisation level.
• Live KPI dashboard. A key performance indicator (KPI) dashboard, updating every time a patient record is completed, will allow you to see the performance of your organisation compared to your Trust/Health Board, ICB, OPEN UK region, NHSE region and national benchmarks.
• Patient KPI summary. You will now be able to see which KPIs have been achieved within each patient's record, making it easier to spot potential gaps in care or data entry errors.

What's next?

We are looking at a number of features to improve the platform further. These include:

• Patient access, allows patients and their parents to view their data and confirm consent to the audit, promoting transparency and patient empowerment.
• NHS single sign-on for NHS staff accessing the platform.
• A public-facing dashboard to replace the current KPI dashboard, updating quarterly.
• And an application programme interface (API), allows data to flow automatically from electronic health records to the audit, reducing manual data entry and improving data accuracy.

Eligibility

We have narrowed down our eligibility criteria for the audit in Cohort 6, meaning only children and young people meeting the following criteria should be entered into the audit.

Inclusion
The following criteria must ALL be fulfilled to verify registration for Epilepsy12.

1. Is a patient within NHS England, Jersey or Wales
   AND
2. Has had a first paediatric assessment* for an episode(s) that was ultimately deemed to be epileptic**

*paediatric service, or a dedicated paediatric team based in A&E. They should not have been referred or assessed by an adult service/team.
**two or more epileptic seizure episodes at least 24 hours apart OR diagnosed with epilepsy for any other reason.

Exclusion
The child or young person has had ONE OR MORE of the following exclusion criteria.

1. Has not been diagnosed with epilepsy.
2. Previously diagnosed with epilepsy before the first paediatric assessment.
3. Previously had a paediatric assessment for earlier seizure episodes considered to be epileptic.
4. Previously been registered in the Epilepsy12 audit.
5. Has received ongoing care within the first year of care for their epilepsy provided by adult or non-NHS services, including non-NHS inpatient and outpatient services and non-NHS dedicated paediatric teams based in A&E.

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:

Submit cohort 8 Data

Publications

In 2023, we published the national report for Round 4, Cohort 4, which followed the Round 3 methodology. We also introduced a quarterly report through an online dashboard. Our full 2024 reporting plan is available below:

Contact

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

Please note that we cannot host any patient identifiable information on our email servers, including NHS Numbers. Please call the team on the number above if you need to discuss these sensitive details.