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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 - - PowerPoint PPT Presentation
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The History of
Neonatal Data Collection in the UK
Kate CosteloeJanuary 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
1600 – 1649
1650 – 1699
1700 – 1749
1750 - 1837
120 – 140
126 – 158
118 – 147
162 – 203
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
0
20
40
60
80
100
120
140
1905 1915 1925 1935 1945 1955 1965 1975 1985 1995
Source: Office for National Statistics, Mortality statistics, Series DH3
Dea
ths
/ 1
,000
live
bir
ths
PostneonatalNeonatal
Detail?
1953 routine recording of birthweight for livebirths
1955 for stillbirths
Incidence of low birthweight, England and Wales, 1953-2001
0
1
2
3
4
5
6
7
8
1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000Source: LHS 27/1 low birthweight returns and ONS mortality statisticsBirth counts, Tables A3.4.1 and A3.4.2
Per
cent
age
of li
ve b
irth
s
2500g and under
2000g and under
1500g and under
1000g and under
Under 2500 g
Data for the years1989 to 1994 are unreliable because of missing birthweights
Under 2000 g
Under 1500 g
Under 1000g g
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 EnglandA 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
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
SIG
NIF
ICAN
T CH
ANG
E
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
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
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
PATI
ENTS
OF A NEONATAL INFORMATION SYSTEM:
FOR
PRO
VID
ERS
Lee Weymss c. 2003
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....
Hopefully it’s far enough advanced to
be secure............
2011!
1948
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