The History of
Neonatal Data Collection in the UK
Kate Costeloe
January 2011
Neonatal Data Analysis Unit (NDAU)
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 18th C
Infant mortality, Colyton, Devon.
Period
Infant mortality / 1000 births
1538 – 1599
120 – 140
1600 – 1649
126 – 158
1650 – 1699
118 – 147
1700 – 1749
162 – 203
1750 - 1837
122 - 153
From Macfarlane & Mugford: Birth Counts 2000
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
Infant mortality, England and Wales, 1905-2001
140
Deaths / 1,000 live births
120
100
80
60
40
Postneonatal
N eonatal
20
0
1905
1915
1925
1935
1945
1955
Source: Office for N ational Statistics, Mortality statistics, Series DH 3
1965
1975
1985
1995
Detail?
 1953 routine recording of birthweight for
livebirths
 1955 for stillbirths
Incidence of low birthweight, England and Wales, 1953-2001
8
Under 2500 g
2500g and under
7
Data for the years
1989 to 1994 are
unreliable because of
missing birthweights
Percentage of live births
6
5
4
Under 2000 g
3
2000g and under
2
1
Under 1500 g
1500g and under
Under 1000g
g
1000g and under
0
1950
1955
1960
1965
1970
1975
1980
1985
Source: LHS 27/1 low birthweight returns and ONS mortality statistics
Birth counts, Tables A3.4.1 and A3.4.2
1990
1995
2000
Detail?
 1953 routine recording of birthweight for
livebirths
 1955 for stillbirths
 Until NN4B in 2003 gestational age in England
was recorded only for stillbirths
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
and in the USA from 1988....
Benchmarking
Quality improvement programmes
A platform for clinical trials
850 units worldwide
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’
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
London & South East England
A Neonatal Data System
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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
Background: Drivers for a Neonatal Data
System
SIGNIFICANT
CHANGE
ESSENTIAL TO:
• Networking
• BAPM Standards (2001)
• BAPM datasets
• European Directive on
Working Hours
• Patient Choice
• measure outcomes
• audit of targets (activity / transfers)
• manage change (networking etc.)
• monitor quality
• monitor resources
• adapt, plan and commission
NEED DATA
Collect Reliable, Consistent
Data
ENSURE IT
INFORMS ON
 Activity
 Resources
 Outcomes
DH Neonatal Intensive Care Services Review (2003): “NIC networks should develop IT infrastructures to support audit activity and outcomes”
Lee Weymss c. 2003
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
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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
What are the benefits?
FOR PROVIDERS
FOR PATIENTS
OF A NEONATAL INFORMATION SYSTEM:
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Supports networking, ensuring continuity and co-ordination of care
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Share patient safety information between units and across the network
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Promote confidence in the NHS and its healthcare workforce
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Provide evidence based feedback on changes in order to adapt and improve on changes
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Better clinical audit data over a wider area including longer term outcomes
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Encourage providers to think beyond their immediate domain and promote principles of team working
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Potentially reduce costs
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Potentially increase service capacity
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Save time on non clinical tasks and reduce frustration with rapid access to consistent adaptable data
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Help co-ordination / planning / commissioning
Lee Weymss c. 2003
History ends here....
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
Hopefully it’s far enough advanced to
be secure............
1948