Full methodology details
Round 3 of Epilepsy12 is comprised of three main audit domains:
- Organisational audit domain (service descriptor)
- Clinical audit (clinical care domain) and associated Health Board/Trust profile
- Patient reported experience measures (PREM) domain
You can download the full methodology below - this describes each of these 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.
Round 3 datasets
You can download the following Epilepsy12 Round 3 datasets below:
- Patient registration and clinical audit forms
- Health Board/Trust Profile
- Organisational audit form
You can also download the Round 2 PREM questionnaire below - this will be reviewed and updated in consultation with children, young people and parents via activities coordinated by the RCPCH Children and Young People's Engagement Team and the patient organisations that are represented on the Epilepsy12 project board.
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 four cohorts:
- Cohort 1 – Patients with a first paediatric assessment for a paroxysmal episode (or episodes) between the “Go live” date (12 July 2018) and 30 November 2018
- First year of care data entry timeframe: 12 July 2018 to 30 November 2019
- Cohort 2 – Patients with a first paediatric assessment for a paroxysmal episode (or episodes) between 01 December 2018 to 30 November 2019
- First year of care data entry timeframe: 01 December 2019 to 30 November 2020
- Cohort 3 – Patients with a first paediatric assessment for a paroxysmal episode (or episodes) between 01 December 2019 to 30 November 2020
- First year of care data entry timeframe: 01 December 2020 to 30 November 2021
- Cohort 4 – Patients with a first paediatric assessment for a paroxysmal episode (or episodes) between 01 December 2020 and 30 November 2021
- First year of care data entry timeframe: 01 December 2021 to 30 November 2022
Data collection for the 2021 organisational audit and the clinical audit for cohort 3 is now closed. We will be extracting and analysing clinical data from the first year of care records for Cohort 3 patients (who had their first paediatric assessment between 1 December 2019 and 30 November 2020), as well as the 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 2020 and 30 November 2021 (Cohort 4) remains open.
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.
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.
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 posters and postcards 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 posters (in English and Welsh) below.
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.
NHS England Quality Accounts List 2019-20 and 2020-21
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 2019-20 and 2020-21.
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.