Epilepsy Information Standard discovery report
Epilepsy12, the national clinical audit of seizures and epilepsies in children and young people for England and Wales, is undertaken by the Royal College of Paediatrics and Child Health (RCPCH). They
PRSB undertook a piece of discovery work to identify the use cases for an epilepsy standard, what standards already exist and what further standards are needed to support epilepsy care, and set out a plan for developing standard(s) to address these needs.
Our discovery work around epilepsy was funded by the RCPCH and we would like to thank them for their support and taking this important work forward.
The scope of the project covers both children and adults with epilepsy. Scope includes data relating to epilepsy which:
- might be required at the point of care
- might be shared between different settings
- a patient might wish to share
- might be required for national audit and approved research or quality improvement purposes
- might be required to support care planning
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
Epilepsy SMI Information Standard
The draft standard should undergo full and extensive consultation to gain consensus from all stakeholders on the content of the information model. System suppliers should be engaged from the outset.
Comprehensive implementation support should be developed to facilitate successful implementation of the standard.
NHS England priorities
Given the health inequalities, the burden of comorbidities and the range of pathways and settings which a person with epilepsy might have to endure, together with the potential savings of £12.1 million identified by the NHS rightcare toolkit, NHSE might like to consider the opportunity to invest in a pilot implementation as a ‘proof of concept’ for this long term condition, in a similar fashion to diabetes.
Given the outstanding support and resources provided by charitable organisations, it appears there may be an opportunity to provide even more support by reducing duplication and freeing up resource. This might be done by working under the umbrella of one organisation, such as the Neurological Alliance, to set up an overarching board to agree allocation of work to be undertaken between parties.
Suppliers should be engaged throughout the process of development of the standard.