The PRSB shares epilepsy information standard project update
A project to develop an Epilepsy Information Standard project has progressed to its final stage. The Professional Record Standards Body (PRSB) was commissioned by NHS England to deliver an information standard that supports integrated, continuous care for both children and adults with epilepsy.
The PIF member said the final phase will draw on insights from earlier phases, including feedback that emphasised the importance of personalisation, continuity of care, and integration of tools. Key recommendations from consultation feedback has included:
- Recording multiple perspectives on seizure episodes.
- Integrating tools used by patients, such as epilepsy passports.
- Capturing seizure clusters distinctly.
- Including fertility and adherence information.
- Supporting transition between paediatric and adult services.
- Addressing holistic needs such as mental health, mood, and use of alternative therapies.
Addressing clinical and holistic needs
The key objectives of the project are to develop an information standard (clinical record specification) which also helps to reduce the inconsistency of data. The new standard aims to address both clinical and holistic needs. The work will also contribute to the delivery of the NHS England 10-Year Plan by supporting national strategic priorities for digital transformation and could enable the development of a Single Patient Record.
Although it uses data from the national Epilepsy12 audit, undertaken by the Royal College of Paediatrics and Child Health (RCPCH), the scope of the project covers both children and adults with epilepsy. The final phase will include consultation with system suppliers to test the standard and help ensure it is practical and implementable across care settings. The draft standard is due to be published on the PRSB website on 22 December.
Read more about the project on the PRSB website here.