Epilepsy standard discovery report

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.

On this page

Draft information model
Discovery report

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
Child having blood test

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
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
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.

CHAT theory also explicitly addresses five areas which if addressed systematically will help overcome stakeholder differences in pursuit of the common goal:

1. Understanding the artefacts that characterise the group and its activity.
• The artefacts might be clinical settings or the forms and templates used to capture and share information. During the pilot we heard about hard copy Dialog response forms; locally generated templates for collating information from different systems; letters and emails to GPs; images, poems or other non-text artefacts that service users might want to include in their ‘about me’ or care plan.

2. Understanding the multi-views of the group. Such groups are always a community of multiple points of view, traditions and interests. 
• Different participants in the group will have different roles and will bring to the group and their roles their own histories, language, and ‘rules’. During our Stocktake preparations and workshops we worked with psychiatrists, mental health nurses, occupational therapists, social workers, transformation leads and voluntary sector representatives, all professions and interests with their own language, approaches professional ‘rules’ but united in their interest in care plans, care planning.

3. Activity systems (like the ICSs) take shape and get transformed over periods of time. ‘Historicity’ is a term coined to express how the group’s problems and potentials can only be understood against their own history. 

 

• ‘We’ve always done it this way’, ‘that didn’t work before’, ‘it’s always like this’, ‘it wasn’t always like this’, ‘they are changing things again’, are all typical statements that often frustrate those charged with overseeing change initiatives. Without addressing the experiences that lie behind such comments you risk repeating mistakes of the past, alienating your stakeholders or just not understanding the real starting point for your transformation project. This is particularly the case for the implementation of the PCSP standard, the success of which will be largely reliant on point-of-care practices and information protocols as well as having systems which are user friendly and appropriately configured.

4. The central role of contradictions as sources of change and development. Contradictions are not the same as problems or conflicts. Contradictions are historically accumulating structural tensions within and between activity systems. Collectively addressing contradictions in how policy, practice, culture and technology interact will empower teams to find genuinely novel solutions for apparently intractable challenges, like interoperability and shared care plan/planning. 

This links to the fifth principle that:

5. the possibility of expansive transformations in activity systems. As the contradictions of an activity system are aggravated, some individual participants begin to question and deviate from its established norms. In some cases, this escalates into collaborative envisioning and a deliberate collective change effort. “An expansive transformation is accomplished when the object and motive of the activity are re-conceptualised to embrace a radically wider horizon of possibilities than in the previous mode of the activity.”