1. The History of Neonatal Data Collection in the UK Kate Costeloe January 2011 Neonatal Data Analysis Unit (NDAU)

2. A relatively recent development.....  1538 establishment of parish registers - baptisms, marriages, burials -  Commonwealth: 1653 – 1660: Parliament developed a civil registration system - births / marriages & burials..... patchy  System collapsed during 18 th C

3. Infant mortality, Colyton, Devon. PeriodInfant mortality / 1000 births 1538 – 1599 1600 – 1649 1650 – 1699 1700 – 1749 1750 - 1837 120 – 140 126 – 158 118 – 147 162 – 203 122 - 153 From Macfarlane & Mugford: Birth Counts 2000

4. A relatively recent development.....  1836: first successful system in England for registration of birth (2000 local registrars) and General Register Office for oversight.  Not compulsory till 1875  D of B, parents’ names & father’s occupation  1855: similar system in Scotland  1864: and in Ireland......  Stillbirths registered 1927 in England& Wales, 1939 in Scotland & 1961 in N Ireland

6. Detail?  1953 routine recording of birthweight for livebirths  1955 for stillbirths

8. Detail?  1953 routine recording of birthweight for livebirths  1955 for stillbirths  Until NN4B in 2003 gestational age in England was recorded only for stillbirths

10. What neonatal systems were there before 2000? (not comprehensive!)  Hospital based............  SE London & Kent neonatal survey – hospital based, all neonatal admissions  Trent Perinatal Survey: population and hospital based, admissions <33w  Northern regional survey etc.  CESDI Stillbirths and neonatal deaths by hospital of death

11. and in the USA from 1988....  Benchmarking  Quality improvement programmes  A platform for clinical trials 850 units worldwide

12. 2000 ff in England: years of activity  September 2000 BAPM.......data project across 10 sites  Development of networks, increased funding for data project for 16 sites in London  Focus on benchmarking – but what did we need?  January 2003 national meeting at RCPCH - to gauge interest - to consider the project in the national context  2003 – publication of DH review with money attached some of which was ring fenced for ‘data’

13. What did the emerging networks need?  They wouldn’t know what they were achieving if they didn’t measure it!  Different people needed different things.......  Mortality and morbidity by BWt, GA, hospital, PCT, region with clear denominators .....linked to staff availability  Web based – a clinical management system  The dataset..... raw objective items with unambiguous definitions  SINGLE DATA ENTRY LINKED TO HOSPITAL SYSTEMS

14. London & South East England A Neonatal Data System Background drivers What are we getting? What are the benefits? Where are we now? Who’s involved? How does it fit with the Care Record System (CRS)? What approach are we taking? What are you getting when? How much does it cost? Who’s getting it? What is required from us? What roles need to be filled? Lee Weymss c. 2003

15. Background: Drivers for a Neonatal Data System Networking BAPM Standards (2001) BAPM datasets European Directive on Working Hours Patient Choice Collect Reliable, Consistent Data  Activity  Resources  Outcomes SIGNIFICANT CHANGE NEED DATA measure outcomes audit of targets (activity / transfers) manage change (networking etc.) monitor quality monitor resources adapt, plan and commission ESSENTIAL TO: ENSURE IT INFORMS ON DH Neonatal Intensive Care Services Review (2003): “NIC networks should develop IT infrastructures to support audit activity and outcomes” Lee Weymss c. 2003

16. What are we getting? (1 of 3) BAPM data set collects: Static Data - mother, baby, transfer and outcome details Daily Data - treatment details, resource details Flexibility to collect ad-hoc data items Clinical summaries as per local design Networking of Information (see next slide) Comprehensive Reporting Cot Finding Functionality Staff Scheduling Functionality Transporting Functionality Long Term Outcomes data collection Lee Weymss c. 2003

17. What are the benefits? Supports networking, ensuring continuity and co-ordination of care Share patient safety information between units and across the network Promote confidence in the NHS and its healthcare workforce Provide evidence based feedback on changes in order to adapt and improve on changes Better clinical audit data over a wider area including longer term outcomes Encourage providers to think beyond their immediate domain and promote principles of team working Potentially reduce costs Potentially increase service capacity Save time on non clinical tasks and reduce frustration with rapid access to consistent adaptable data Help co-ordination / planning / commissioning FOR PATIENTS OF A NEONATAL INFORMATION SYSTEM: FOR PROVIDERS Lee Weymss c. 2003

18. The aim has to be a system which covers the whole country (all the countries!) using a common platform and internationally standardised data items including those used for NNAP with the data being available to NDAU History ends here....

19. Hopefully it’s far enough advanced to be secure............

20. 2011! 1948