APPENDIX 21
Memorandum by Shona Golightly (MS 27)
1. INTRODUCTION
1.1. A fundamental requirement for the delivery of
high quality NHS services is the provision of accurate and timely
data for both clinicians and health care planners. In the UK over
600,000 women per year use maternity services at a gross cost
in England and Wales of £1.1 billion per year. [45]A
huge amount of data is generated and stored as part of this activity,
yet despite this, there is still no readily available national
dataset relating to maternity services in England and Wales.
1.2. The recent National Sentinel Caesarean
Section Audit has provided much needed national data on caesarean
section rates. However the NHS still does not have robust clinical
data on many other important areas such as home births, instrumental
deliveries, rates of anaesthesia or subsequent infant health.
The latter is a particularly important factor as a central outcome
for maternity services is not just the health of the mother but
also the health of the newborn. It is time consuming and expensive
to set up one off studies to collect such data, a national dataset
is long overdue.
1.3 The Maternal and Child Health Information
Systems project (MACHIS), an NHS funded research project, was
set up in response to this lack of readily available data. It
looked at the feasibility of producing a large comparative maternity
dataset from clinical data captured electronically by maternity
units as a routine part of care delivery. As principle researcher
on this project, I would like to share with the committee some
of the projects findings and recommendations.
2. THE MATERNAL
AND CHILD HEALTH
INFORMATION SYSTEM PROJECT
(MACHIS) [46]2.1 The
Maternal and Child Health Information Systems Project (MACHIS)
was set up in 1998 at the Department of Epidemiology, Imperial
College. It studied the use of maternity and child health information
systems in a large geographical area comprising 26 health authorities
and 110 trusts covering approximately 184,000 births a year—almost
one third of the births in England. It examined the content and
quality of maternity and child health data collected on such systems
and whether this data could be pooled to provide a large comparative
maternity dataset for public health purposes.
2.2 Project findings:
2.2.1 Maternity information systems are
a potentially useful source of data. The clinical ownership of
such systems means they contain high quality data of clinical
relevance. Of the 58 acute trusts in the North and South Thames
area providing maternity services, 80% were using some form of
computerised information system to collect maternity data and
57% had a dedicated maternity information system.
2.2.2 Extracts of maternity data from different
information systems were obtained from 79% of trusts approached
and subsequently pooled to form a comparative dataset.
2.2.3 Comparing extracted maternity data
with ONS birth registration information demonstrated that it was
feasible to combine data from different systems to produce comparative
population based maternity data for a large geographical area.
2.2.4 MACHIS also studied child health information
systems and attempted to link maternity data with subsequent child
health information. Collecting maternity information alone is
not enough. A central outcome for maternity services is the health
of the baby and those monitoring maternal care also need to know
health outcomes in the children.
3. CONCLUSION
AND RECOMMENDATIONS
FROM MACHIS
3.1 The MACHIS project demonstrated that
the potential infrastructure to allow the collection of comparative
maternity data on a population base is largely in place. Furthermore,
much of the information on maternal health is already being collected
as a by-product of the delivery of maternity services. However
if existing systems are to be used to their full potential in
providing the information needed both for the care of the individual
women and for auditing and monitoring trends in practice and care,
the following issues need to be addressed.
3.2 Investment in the maternal and child
health information infrastructure. At the time of the MACHIS project
some maternity units were still without a dedicated computerised
maternity information system. This is clearly an essential prerequisite
to the collection and linkage of high quality clinical information
on maternity and subsequent infant health.
3.3 The provision of NHS number at birth
is essential to the ability to be able to provide comprehensive
information on newborns and link it to maternal information. Thankfully
due the NHS Numbers for Babies Project this has now largely been
achieved.
3.4 There is a clear need to define standardised
datasets for maternity and child health to be implemented nationally.
The absence of any such dataset currently restricts the potential
for collating population based data from existing sources.
3.5 An organisational infrastructure
need to be established at a national and regional level to act
as a local clearing house for routinely collected maternity information.
This would have additional benefits in providing much needed denominator
data for the Confidential Enquiry into Maternal and Child Health;
information on rare conditions and their outcomes and comparative
information between trust, strategic health authorities and regions.
Work conducted in Wales suggests that such collation is of minimal
cost[47]
February 2003
45 Middle C, Macfarlane A. Labour and delivery of normal
primiparous women:analysis of routinely collected data. Br J Obstet
Gynaecol 1995;102:970-7.Back
46 Towards population based maternity & child
health data: Findings form a detailed study of maternity and child
health information systems in the South East of England. Report
for North Thames R&D Responsive Funding Group July 1999. Report
prepared by Dhona Golightly and Zoe Charles on behalf of the project
grant applicants: Dr Jean Chapple, Professor Paul Elliott, Professor
Philip Steer, Dr Antony Staines & Dr Anna Sharma. Back
47 Andrews J, Cotter M, Richards R, Lewis D. Report
of Maternity Data/Information Aspects of the Child Health System.
Healthcare Management Information Service 1996. Back
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