APPENDIX 12
Memorandum by the Director, West Midlands
Perinatal Institute (MS 18)
SUMMARY
Routine collection of data is required to underpin
the planning of a safe and high quality maternity service. This
is now possible with web-based IT solutions which allow the building
of a patient centred electronic record, to feed into anonymised
regional and national registers. There is a need to establish
standard, core datasets and to mandate their collection, to be
able to audit key processes and outcomes in maternity care.
THE PERINATAL
INSTITUTE
1. The West Midlands Perinatal Institute
is an NHS organisation hosted by the Birmingham and the Black
Country Strategic Health Authority and is funded by regional levies
as well as various other NHS and DoH sources. A substantial part
of our remit is to run this region's confidential enquiries into
maternal deaths (CEMD) and confidential enquiries into stillbirths
and deaths in infancy (CESDI). I am the director of the Institute,
and by background a consultant obstetrician with an interest in
perinatal epidemiology.
THE PROBLEM
2. CESDI, CEMD and other studies consistently
show a large component of potentially avoidable factors associated
with adverse pregnancy outcome. However, the lack of routinely
collected data makes the interpretation of trends and underlying
causes impossible. Instances of adverse outcome are relatively
infrequent in each unit; hence data from different units need
to be linked up to be able to study patters and priorities for
a modern, networked and needs-focussed provision of care.
3. Data collection in maternity units varies
considerably in quality, purpose and extent. Usually, only instances
of adverse outcome are collected. However it is essential to also
have denominator data, ie information on all pregnancies and births,
lest one sees only the tip of the iceberg. Such information is
vital to allow development of pro-active strategies for prevention.
Furthermore, for each case of bad outcome, there are many near
misses—cases where outcome was satisfactory not because,
but despite the care which was given.
4. Various public health initiatives seek
to address issues such as teenage pregnancy, smoking, and breast
feeding rates. These projects need to be monitored and evaluated,
which again requires routinely collected information. Good denominator
data is also essential to be able to pursue NHS targets for the
reduction of inequalities.
5. One example, which concerns the care
of the expectant mother, relates to antenatal screening. Detection
rates of congenital anomalies are directly linked to the uptake
of screening, which in turn relates to information giving, availability
and acceptance of the tests. The engagement of the mother in this
process is essential to ensure that she is able to give informed
consent, and this is currently often not the case. The process
needs to be carefully monitored, with collection of data in all
pregnancies. This will also allow interpretation of geographical
variations and time trends in anomalies.
6. Another example concerns the care of
the developing baby. It is now clear that there is a significant
association between stillbirths or neonatal deaths and preceding
intrauterine growth restriction. If this was detected in time,
it would in many instances allow the safe delivery of a mature
enough fetus from an unfavourable intrauterine environment. However,
fetal growth problems are not usually identified antenatally (studies
suggest that the rate is 25% or less), even though they can be
detected by low technology means (ie serial measurement of maternal
fundal height with a centimetre tape). Although the identification
of fetal growth problems is an agreed primary aim of antenatal
care, few if any units are able to report how many of their small-for-gestational
age babies are detected antenatally.
7. Often, avoidable compromise is not so
much due to individual mistakes, but due to a maternity care system
which is historical in nature—rather than one developed
in recognition of the modern needs of mother and baby.
WHAT WE
ARE DOING
ABOUT IT
8. Recent technological advances allow the
provision of IT solutions with exciting potential. We are currently
implementing a programme of regional, web-based data collection
with data security, encryption and confidentiality policies (see
www.perinatal.org.uk/manners). The key advantage of this client-
server system is that it is not unit dependent, but patient centred:
each mother and baby have their own unique electronic file on
the NHSNet, identified by NHS number, and accessible by all care
stakeholders with the appropriate level of permissions. Data can
then be anonymised for analysis and for the interpretation of
local and regional trends.
9. Field trials are proving successful.
An important principle is that data entry is accompanied by useful
outputs (eg birth summaries) which are an important incentive
to ensure high ascertainment and data quality.
10. Perinatal data which can be collected
include details from the mother's booking in early pregnancy,
with her socio-economic background; provision and result of antenatal
screening; labour and delivery; condition of the baby including
data for the anomalies register, and various aspects of neonatal
care. The system can be extended into childhood to include immunisation,
screening, developmental milestones, acute admissions and at-risk
registers. Development of electronic registers for children are
also consistent with recommendations of the recent report by Lord
Laming.
11. The regional collection of data helps
to ensure that it captures patients who move between geographical
units, who are often the most vulnerable and easy to lose to follow
up. The data system facilitates easy reporting for purposes of
audit—for the maternity unit, primary care trust, strategic
health authority, or region wide summaries. Regional data collection
and ascertainment could of course be amalgamated to provide a
national picture, on-line. It is relatively inexpensive yet effective,
and can link easily with full electronic patient records where
they exist.
12. To make this happen requires central
acknowledgement that routine collection of data is a priority
which should underpin the provision of all maternity care. There
is also an urgent need for the NHS to foster acceptance of a universally
acceptable, standardised core maternity dataset.
12 February 2003
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