1. An introduction to the Clinical Audit Phase
June 2018

2. Overall aims of the Epilepsy12 Clinical Audit phase
The clinical audit aims are to encourage and facilitate improvements in the care provided to children and young people by paediatric epilepsy services. The clinical audit phase covers:
Identifying and registering all patients who have a first paediatric assessment after the Go live date for a paroxysmal episode or episodes where an EEG referral is made or indicated
Recording the details of the first paediatric assessment for registered patients
Recording the details of the first year of care that follows the date of the first paediatric assessment with a focus on 12 key care performance indicators
Providing registered Health Boards and Trusts with live individual patient monitoring outputs within the system covering care planning, details of seizure types and frequency and progress against the key performance indicators
Allowing for the capture of ongoing years of care
Analysing and reporting on the data captured through the clinical audit and making recommendations for improvements to key audiences

3. Reminder of Clinical Audit 12 Performance Indicators
The indicators have been updated for Rounds 3+ as shown here
Themed slide 1
Along with the first 3 mandatory slides:
a min of one themed slide should be selected
Further slides specific to the presentation subject can be created under each themed slide chosen

4. So in summary, registration is for ALL children with a first paediatric assessment after GO LIVE!
Any child or young person:
having a first paediatric assessment
after the ‘GO LIVE date’
for a paroxsysmal episode or episodes
where EEG is undertaken or indicated
…should be registered into the audit by EEG Services & Paediatric Services
(the system checks against the patient’s NHS number -
so duplicate registration of the same patient cannot occur)

5. Consent is not required but patients can opt out
The RCPCH has section 251 approval from the HRA Confidentiality Advisory Group for Epilepsy12 to collect patient identifiable data without explicit patient consent (see reference: 17/CAG/0184)
The Epilepsy12 signposting posters and postcards which were distributed to all Designated Leads should be made available to Patients and Parents/Carers so that they know how to obtain a copy of the Epilepsy12 Privacy Notice and find out more about:
Which areas of care the project covers
How the information is collected and used
Their data protection rights regarding the use of this information
How they might be involved
The data platform allows users to indicate if a patient has opted out!

6. Clinical Audit Inclusion and Data Entry Flow
Themed slide 1
Along with the first 3 mandatory slides:
a min of one themed slide should be selected
Further slides specific to the presentation subject can be created under each themed slide chosen

7. Registration can be undertaken by either EEG services or the assessing Health Board/Trust
Online process for registered users
Takes about 2 minutes
Consent not needed
Families can be given information leaflet
Families can opt out at any time

8. All ongoing patients will belong to a UK (England & Wales initially) - wide cohort of patients
GO LIVE
Oct 18
Cohort 1
Oct 18
Oct 19
Cohort 2
Oct 19
Oct 20
Cohort 3

9. The date of first paediatric assessment is the key date
GO LIVE
Oct 18
Date of first paediatric assessment
1st year of care
2nd year of care
3rd year of care
etc. until discharged or transferred

10. The platform will allow clinical teams to capture data from each child within each cohort for each year of their care
GO LIVE
Oct 18
Cohort 1
Oct 18
Oct 19
Oct 19
Oct 20
Cohort 3

11. Small data! Only ‘required’ data is ‘required’!
Children indicated on the platform as without epilepsy will require no further data entry
Each child with epilepsy has a minimum core dataset
Data is locked and submitted after the first paediatric assessment and after each subsequent year of care

12. Data can be updated ad hoc, at each review or at the end of each year

13. Trust team can see names of all registered patients for their trust
Trusts submit data for each patient for each year of care
Patients can opt out at any time
Data completeness can be seen by all

14. Care Planning Summary Reports
Displays all recorded care planning details added over time and can be viewed online and printed off if required

15. Live Individual Patient Timeline
Themed slide 1
Along with the first 3 mandatory slides:
a min of one themed slide should be selected
Further slides specific to the presentation subject can be created under each themed slide chosen
Valproate
CL..
Lamotrigine
Provides a real-time overview of information entered for each individual patient over time

16. Live Individual Patient Timeline
Themed slide 1
Along with the first 3 mandatory slides:
a min of one themed slide should be selected
Further slides specific to the presentation subject can be created under each themed slide chosen
Valproate
CL..
Lamotrigine

17. Children can be transferred between trusts
In rounds 1 and 2 transferred patients were excluded
In rounds 3+ patients can be transferred from one trust with their current data
…and then accepted by another trust

18. Find out more and contact the project team via:
Themed slide 1
Along with the first 3 mandatory slides:
a min of one themed slide should be selected
Further slides specific to the presentation subject can be created under each themed slide chosen
@Epilepsy_12