An introduction to the Clinical Audit Phase June 2018

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

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

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)

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!

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

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

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

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

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

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

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

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

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

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

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

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

Find out more and contact the project team via: www.rcpch.ac.uk/epilepsy12 epilepsy12@rcpch.ac.uk 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