Epilepsy12 methodology and data submission

The current round 4 of Epilepsy12 comprises two main data processing and reporting components - the organisational audit and the clinical audit. This page provides details on the methodology and data submission process for the two components.

Recent updates

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 a new diagnosis of epilepsy during the first 12 months following a first paediatric assessment
  • Organisational audit (service descriptor) - organisation of paediatric epilepsy services

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 and NHS England regions.

You can also download the datasets for the two audit components: patient registration and clinical audit forms; and organisational audit forms. You can find the Round 3 methodology and datasets here.

The Epilepsy12 team worked with the Youth Advocates to produce a Patient and Parent Guide and Young Person & 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.

A new platform has been launched for Cohort 6 data entry. Read more below and download our flyer for more information. Guidance on accessing the platform is available below.

Cohort 6 data entry

Health Boards and Trusts can now submit Cohort 6 data via the newly launched data entry platform. You cannot enter data for Cohort 5 on this platform.

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 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.

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 onto 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, allowing 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), allowing 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 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:

    Cohort Patients with a first paediatric assessment for a paroxysmal episode (or episodes) First year of care data entry timeframe Data entry deadline
    4 Between 1 December 2020 and 30 November 2021 1 December 2021 to 30 November 2022 10 January 2023
    5 Between 1 December 2021 and 30 November 2022 1 December 2022 to 30 November 2023 14 January 2024
    6 Between 1 December 2022 and 30 November 2023 1 December 2023 to 30 November 2024 14 January 2025

    The Cohort 4 annual report was published in July 2023. Enter Cohort 5 clinical data and 2023 organisational data via the current Epilepsy12 data platform. The data entry deadline is 9 January 2024. More information about Cohort 5 data entry is available here.

    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 on an online dashboard. Our full 2024 reporting plan is available below:

    Spring 2024
    • Trust-level reports
    • Outlier identification and management (April)
    • Quality improvement case studies
    • NHSE data packs
    Summer 2024
    • Annual report
    • Clinical and organisational extended analyses
    • Q1 quarterly report (April - June)
    • Clinic posters
    Autumn 2024
    • Q2 quarterly report (July - September)
    Winter 2024
    • Q3 quarterly report (October - December)

    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 analyses are:

    • Epilepsy Specialist Nurse (ESN): The proportion of children and young people diagnosed with epilepsy that were seen by an ESN in their first year of care.
    • Tertiary input: the proportion of children and young people diagnosed with epilepsy, meeting defined criteria for tertiary input, 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. (Note: This measure has been temporarily suspended and was not used for the outlier analyses in 2023)

    The results of the 2023 outlier process are available on the 2023 annual report page.

    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.

    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.

    You can download the Data Protection Impact Assessment (DPIA) of the new platform below.

    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?

    Epilepsy12 is an important national project which helps epilepsy services to measure and improve the quality of care for children and young people with epilepsies. The Royal College of Paediatrics and Child Health (RCPCH) are commissioned by the Healthcare Quality Improvement Partnership (HQIP), as part of their National Clinical Audit and Patient Outcomes Programme (NCAPOP). This means that we were chosen to run Epilepsy12 on behalf of NHS England and the Welsh government.

    Why are hospitals and clinics taking part in Epilepsy12?

    We want to get better at looking after children and young people who have epilepsy. Hospitals and clinics can help by collecting important information on the care that they provide to their patients. The RCPCH will look at this information and let teams know where they are doing well and what they need to get better at. The RCPCH will also tell hospitals and clinics how they are doing, compared with others who are taking part.

    All hospitals and clinics in England and Wales that care for children and young people with epilepsy should take part in Epilepsy12.

    What information does Epilepsy12 collect?

    Epilepsy12 wants to find out how hospitals and clinics decide if a child has epilepsy and how they look after them if they do. For example, we collect information on the types of medicine that children with epilepsy receive, and the doctors and nurses that look after them. You can see a list of all the information that Epilepsy12 collects on our website: www.rcpch.ac.uk/epilepsy12.

    The private information, known as personal data, collected by Epilepsy12 includes patient’s name, date of birth, gender, home postcode and something called their "NHS" number. NHS numbers help hospitals and clinics to identify patients. Your hospital or clinic already collects this information, so this isn't something new for Epilepsy12.

    What happens to the private information?

    Epilepsy services enter your information collected for Epilepsy12 onto a safe and secure website. This website can only be accessed by staff working in hospitals and clinics who have the right access permissions, or those working on the Epilepsy12 project at the RCPCH.

    The RCPCH will not send your private information to anyone else unless they have permission to do so. If Epilepsy12 information is needed for other projects to compare services in England and Wales, they will need permission from HQIP. For HQIP to approve this request, the project must show that they follow the strict data protection policies described in HQIP’s guidance to applicants, and must aim to improve care for children with epilepsy. Data will only ever be shared in a pseudonymised format, which is where information that could identify you is removed or replaced (unless the requesting institution has its own legal basis for holding patient identifiable data).

    We follow the UK Data Protection laws when storing and using your private information to keep it secure. So, your personal data will not be shared with countries outside the UK or European Union.

    The results of the Epilepsy12 audit are published in our annual reports and patient and parent guides, which are publicly available on our website and via https://data.gov.uk/. All data is reported at the level of individual NHS Trusts so that no information that could identify you will ever be published.

    What if I don't want my information to be collected for Epilepsy12?

    If you do not want your personal information to be collected for the Epilepsy12 audit, please let your paediatric epilepsy team know and they will remove you from the submission so that we don't receive the data. Alternatively, you can contact the Epilepsy12 team directly at epilepsy12@rcpch.ac.uk and we will ensure that your personal identifiers are removed from our database.

    In England, the National Data Opt-Out service allows patients to opt out of their information being used for research or planning purposes. The National Opt-Out service does not remove your information from Epilepsy12.

    In England, the National Data Opt-Out (NDO) service allows patients aged 13 or over (or those with parental responsibility for patients under 13) to opt out of their information being used for purposes beyond their direct care. The Secretary of State for Health and Social Care, having considered the advice from the Health Research Authority Confidentiality Advisory Group, has decided that the NDO will not be applied to Epilepsy12.

    This is because applying the NDO would introduce biases to the data and make it difficult to monitor care safety and quality and because of the importance of the data collection for improving patient care. Personal data collected by Epilepsy12 is not for research; it is processed to make sure epilepsy care is being provided safely and that health services meet national standards for care quality.

    How long do you keep my personal information for?

    The Epilepsy12 team at the RCPCH acts as the data processor on behalf of the Healthcare Quality Improvement Partnership (HQIP), NHS England and Digital Health and Care Wales, who are the data controllers for Epilepsy12 data. The RCPCH will hold your information for as long as it is commissioned by HQIP to deliver the Epilepsy12 audit. All data will be deleted or transferred back to HQIP within two weeks of the end of our contract.

    Why didn't anyone ask me if they could collect my personal information for Epilepsy12?

    The legal reason is that it is in the public interest for the RCPCH Epilepsy12 project to use your personal data. Epilepsy12 has section 251 approval to collect patient identifiable data in England and Wales without explicit patient consent as it improves epilepsy care for children. To find out more about section 251 approval, visit the Health Research Authority website.

    Processing is permitted under the UK General Data Protection Regulation (GDPR) on the following legal bases:

    • Article 6 (1) (e) 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.

    This is justified through commissioning arrangements which link back to NHS England and the Welsh Government.

    • 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.

    This is justified as Epilepsy12 aims to drive improvements in the quality and safety of care and to improve outcomes for patients.

    This means the audit does not need to ask permissions from everybody. However, we take your privacy seriously, so we offer you the option to opt out if you do not want to take part. The section below ‘What rights do I have?’ explains how you can do this and more about your rights.

    What rights do I have?

    If you have any questions or would like to make any rights requests, please contact your unit directly. For the data we collect for Epilepsy12, you have the following rights:

    • Right of access: The personal data we hold about you is provided by your unit. We can let you know which categories of data we collect, depending on the type of submission, but you will need to contact your unit directly for a copy of the information as they are data controllers of your patient record.
    • Right to erasure and Right to object: The right of erasure does not apply to this audit because your data is being processed for the purposes of performing a task in the public interest, which in this case is for ensuring high standards of quality and safety health care. However, if you want to opt out of future audit rounds, please let your unit know and they will remove you from the submission so that we don't receive the data. Alternatively, you can contact the Epilepsy12 team directly at epilepsy12@rcpch.ac.uk , and we will ensure that your personal identifiers are removed from our database.
    • Right to rectification of inaccurate data: Any requests to amend or update your personal data should be sent to your unit as data controller. If we receive any requests, we will forward these to the unit.
    • Right to restriction: Any requests for restriction of processing should be sent to your Trust and they will inform us where applicable.
    Who should I contact if I need more information?

    If you would like more information about Epilepsy12, please contact epilepsy12@rcpch.ac.uk or call us on 020 7092 6168. You can also contact the College’s data protection officer for queries about how the college process personal data: information.governance@rcpch.ac.uk. If you have any further questions or concerns about how your information is being shared for the purposes of the audit, please first contact your hospital team.

    HQIP are the joint data controllers with NHS England and Digital Health and Care Wales for the England and Wales elements of the audit respectively. HQIP can also be contacted if you have any questions or concerns about how your information is being used for the audit: data.protection@hqip.org.uk.

    You do also have the right to lodge a complaint with the Information Commissioner’s Officer (ICO) at casework@ico.org.uk, if you have concerns about the way your/your child’s personal data is being handled.

    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.

    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, as well as the amended approvals including the NDO exemption and the new data entry platform.

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

    Data disclosure policy

    The Epilepsy12 audit collects data from children and young people with a first paediatric assessment for paroxysmal episodes in England and Wales. In order to maintain patient confidentiality, Epilepsy12 applies a number of disclosure control techniques. These techniques aim to reduce the amount of detailed information enclosed within Epilepsy12 outputs to prevent unlawful disclosure of identifiable information. Disclosure control aims to minimise the risk of disclosure to a very low level, as it is unfeasible to completely eliminate risk.

    Within Epilepsy12 outputs, disclosure control methods include:

    • Aggregation. Combining data into broader categories or ranges to reduce granularity (e.g. deprivation quintiles and ethnic groups).
    • Suppression. Epilepsy12 will supress data where figures are less than 3 but not equal to 0. Secondary suppression of the next smallest figure is also necessary to avoid the deduction of small numbers

    These strategies are applied consistently through all forms of public reporting.

    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 2022-23 and 2023-24.

    The information below may be used to support Trusts in England for their Trust Quality Account submission - 2023-24 audit:

    • Annual data submission deadline – 9 January 2024 (for clinical audit patient ‘Cohort 5’ & 2023 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.
    • National report publication date - July 2024

    UPCARE Tool

    The Understanding Practice in Clinical Audit and Registries (UPCARE) tool is a protocol to describe the key features of clinical audits and registries designed by HQIP. It has been designed to provide a "one-stop" summary of the key information about how clinical audits and registries have been designed and carried out. It is designed to help people understand the methods, evaluate the quality and robustness of the data, and find information and data that is most relevant to them.

    Download the Epilepsy12 UPCARE tool below.

    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.

    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.