Epilepsy standard discovery report and draft information model
We were commissioned by the Royal College of Paediatrics and Child Health (RCPCH) to explore the development of an information record standard for epilepsy.
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.
Scope
The scope of the project covers both children and adults and 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 for national audit and approved research 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
Progress to date: discovery and user centred design
We have completed work on the projects 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 next phase of the project will be to undertake full standard development, where the draft standard should undergo full and extensive consultation to gain consensus from all stakeholders on the content of the information model.
Limitations in available funding means that further development of this standard is currently paused. However, we and RCPCH are exploring funding opportunities and hope to resume the development of this much needed information record standard in the future.
Discovery objectives |
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Identify use case(s) |
Gather evidence from research and a literature review |
Map to existing standards |
Obtain expert input to develop a first draft standard |
Set out the plan, approach, costs, and recommendations for taking the work forward into delivery |
User centred design objectives |
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Review specialised epilepsy sections (formulation, outcomes, risk factors) |
Draft outline implementation guidance |
Update use cases as required |
Update information model |
Test with reference group |
Background
Epilepsy is one of the most common neurological conditions in the world. Its impact can vary considerably from person to person depending on which part of the brain is affected. Epilepsy can affect anyone of any age, gender, race or ethnicity, but is most commonly diagnosed in childhood and people over the age of 60.
Epilepsy12 is the national clinical audit of seizures and epilepsies in children and young people for England and Wales. The Epilepsy12 (E12) team identified the need for an agreed epilepsy information standard to facilitate sharing of data relating to a patient’s epilepsy care between health and care settings, and for secondary uses such as the national clinical audit.
Although the audit is undertaken by the Royal College of Paediatrics and Child Health (RCPCH), any information standard must also meet the requirements of adults with epilepsy.
There are many other drivers for the epilepsy community to agree and embed data standards for epilepsy. The RCPCH passport is an example of a patient facing resource that was published 2015 to support families having up to date copies of their epilepsy health details. Implementation was difficult because there were no established routes to update and derive that information from Electronic Health Records (EHRs). This issue is also problematic for many types of epilepsy care planning as updating accurate and consistent information about a person’s diagnosis is a key component.
Although the 2022 Epilepsy12 audit reported that 77% (91/119) of trusts/health boards had some type of local database or registry for their epilepsy patients, there is no evidence these describe epilepsy diagnoses and care in consistent ways or are linked to EHRs. The complexity of epilepsy diagnosis, its relationship with other co-morbidities and its evolution over time means that the interoperability and aggregation of datasets are particularly difficult.
Resources
Draft information model (xls)
The information in a standard is structured in an information model with data items and uses internationally recognised coding terminologies.
PRSB discovery report
Find out about the project in more detail in our discovery report.
Epilepsy 12: Find out more
RCPCH work to improve the quality of care for children and young people with seizures and epilepsies in England and Wales.