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