Epilepsy Information Standard: phase 3
Epilepsy is the most common significant long-term neurological condition of childhood and affects an estimated 112,000 children and young people in the UK.
Epilepsy12 seeks to help improve the standard of care for children and young people with the condition in England and Wales. To do this, the audit collects and processes patient data. This information is used by the audit to highlight areas where services are doing well, and also identify areas where they need to improve.
On this page
About the project
The Royal College of Paediatrics and Child Health (RCPCH) commissioned the PRSB to explore the development of an information record standard for epilepsy.
We have completed work on the project’s initial two phases, discovery and user centred design, and both the discovery report and draft information model are now published and available to download. The focus of the third phase is to consult on the draft information record standard.
Aim and objectives
The overall aim of the project is to support the integrated and continuous care of epilepsy across settings by developing an information standard for epilepsy data items which can be utilised across all settings to facilitate sharing of data between these settings.
The key objectives are to:
- agree a consensus definition of epilepsy data items
- develop an information standard defining epilepsy data items
- facilitate reduction in the inconsistency of data through a standard that will enable interoperability.
The objectives of the information record standard phase are to:
- update use cases as required
- agree issues to be tested in consultation
- refine and iterate the model through consultation
- log any points for inclusion in implementation guidance, safety case and hazard log.
Scope
The scope of the project covers both children and adults with epilepsy. Scope includes data relating to epilepsy which:
- might be required at point of care
- might be shared between different settings
- a patient might wish to share
- might be required to support national audit and approved research purposes
- might be required to support care planning.
Consultation dates
We are seeking our stakeholders’ thoughts on the draft standard and their view of the completeness of the data proposal. Please have a look at our consultation dates below and register for the events where you think you could contribute the most.
Webinars
Date | Topic | Target group | Link to register |
|---|---|---|---|
Mon 13th January 2025 13:00-14:30pm | Webinar 1: Professionals – Formulation (including risks)
|
• Epilepsy specialists • Those with direct experience – consultants, etc. | Registration closed |
Weds 15th January 2025 13:00-14:30pm | Webinar 2: Professionals – Outcomes
|
• Epilepsy specialists • Those with direct experience – consultants, etc. | Register now |
Mon 27th January 2025 13:00-14:30pm | Webinar 3: Public
| Users of epilepsy services, parents and carers | By invitation only |
Weds 29th January 2025 13:00-14:30pm | Webinar 4: Professionals – What’s important to you in your setting?
| All professionals involved in the epilepsy pathway, but not necessarily specialists. • Wider group – including GPs specialising in epilepsy, epilepsy nurses, social workers, SENCO/specialist school settings. | Register now |
Focus groups
Dates and registration details for the focus groups will be available on this page from January 2025.
Date | Topic | Target group | Link to register |
|---|---|---|---|
Monday 3rd February 2025 5:30-7:00 pm | Focus group 1: Younger children | Children aged 10+ | Register now |
Thursday 6th February 2025 5:30-7:00 pm | Focus group 2: Older adults
| Adults aged 65+ | Register now |
Friday 7th February 2025 5:30-7:00 pm | Focus group 3: A proxy view of children and young people (particularly under 10s)
| Parents, carers and guardians | Register now |
Monday 10th February 2025 5:30-7:00 pm | Focus group 4: The transition from child to adult services
| Young adults aged 16 – 20 | Register now |