Epilepsy12 - methodology, information governance and datasets for round 3

This page provides details of the methodology, datasets and related information governance processes for round 3.

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

The full methodology for round 3 (see PDF below) 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 access copies of the following Epilepsy12 round 3 datasets in the “Downloads” section below:

  • Patient registration and clinical audit forms
  • Health Board/Trust Profile
  • Organisational audit form

The round 2 PREM questionnaire (also see PDF below) 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 which are represented on the Epilepsy12 project board.

Data collection and reporting - key dates

We have now completed the organisational audit data collection phase and are pleased to report that 100% of registered Health Boards/Trusts submitted their data. A resulting national report is currently undergoing the sign-off process by NHS England and the Welsh Government and is due to be published in Autumn 2018.
 
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 as follows:

  • 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
  • Cohort 2 – Patients with a first paediatric assessment for a paroxysmal episode (or episodes) between 1 December 2018 to 30 November 2019
  • Cohort 3 – Patients with a first paediatric assessment for a paroxysmal episode (or episodes) between 1 December 2019 to 30 November 2020

The first clinical audit report for data collected for patients within Cohort 1 will be published in March 2020. 

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. 

The RCPCH and Epilepsy12 project team members take their responsibilities for maintaining the security of patient identifiable data extremely seriously. The full Epilepsy12 Privacy Notice is available to download at the bottom of the page and it 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?

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.  Copies are available to view in the downloads section below. 

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 2018-19

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 2018-19.

Contact

If you have any queries, please contact the Epilepsy12 team at epilepsy12@rcpch.ac.uk.