1. NDAU/NNAP Collaborators Meeting A National Neonatal Network Neena Modi Professor of Neonatal Medicine Imperial College London Vice President, Science & Research Royal College of Paediatrics & Child Health

2. Best use of electronic patient data is recognised “Providers of specialist neonatal services must maintain accurate and complete data, and actively participate in national clinical audits and applicable research programmes” Neonatal Quality Standards 2010 “Access to patient data is vital …to determine the long term effects of treatment and to show how public health can be improved, for example by the better provision of services” Academy of Medical Sciences, A new pathway for the regulation and governance of health research, 2011

3. A unique opportunity for the UK Investigations of population incidence, temporal trends, regional variation, impact of quality improvements and outcomes for clinical trials possible with existing data collection methods All within our grasp Data entry must be reliable

4. Key principles of data collection Definitions must be clear and unambiguous Capture raw data, not aggregated or derived data Capture data once  These raw data can be put to many uses to serve many purposes  Electronic algorithms ensure derived items are categorised or calculated in the same way for everyone  NNAP has moved away from the initial limited dataset to utilising the richness of the full dataset

5. Electronic algorithms Level of care assignment/Healthcare Resource Group (HRG) is derived from British Association of Perinatal Medicine core data items entered daily Level of care is not assigned by neonatal unit staff This ensures consistency in assignment to a particular level of care or HRG

6. Development that underpins NNAP; use of raw data Development of case definition Blood-Stream Infection (BSI): The pure growth of a recognised pathogen OR in the case of a mixed growth or growth of skin commensal, the added requirement for at least 3 of 10 predefined clinical signs Late onset BSI: BSI ≥ 72h age Catheter-Associated BSI: Late onset BSI with central vascular line present at time of culture or in preceding 48h BSI Rate: Episodes of BSI per 1000 patient days Stratified BSI rate: Stratified by eg gestational age, other risk factor/s Data items for numerator Date/time of culture; culture result; patient risk factor/s; patient ID; hospital ID Data items for denominator Total patient days; total patient days with risk factor/s; hospital ID

7. National Collaboration Caldicott Guardian approval received from 145 of 171 hospitals in England 9 hospitals newly entering data, invited to participate 9 not yet using electronic system 8 approvals outstanding 15 Scottish, 13 Welsh and 7 Northern Ireland hospitals

8. New initiatives Parent Reported Experience Measures Neonatal Quality Standards Quality Improvements (eg BSI, NEC) Health services and clinical research Data to support evidence based practice AND evidence based policy

9. A UK National Neonatal Network National Neonatal Network 1)National geographical coverage 2)All neonatal admissions 3)Participation in clinical research 4)Participation in quality improvements 5)Outputs in public domain 6)No additional cost Vermont Oxford Network 1)Hospital based coverage 2)Birth weight based (401-1500g) 3)Participation in clinical research 4)Participation in quality improvements 5)Outputs for subscribers 6)$4000 pa for 401-1500g infants 7)$4300-$6400 pa for all infants >401g

10. Acknowledgements Contributing Neonatal Units around the country, staff, parents and patients The NNAP and NDAU teams Collaborators, supporters and funders