APPENDICES TO THE MINUTES OF EVIDENCE
APPENDIX 1
Memorandum by Professor Phillip Steer
(MS 2)
Submission to the Parliamentary Health
Committee on the Collection of Data from Maternity Units
SUMMARY
Electronic collection of data in the maternity
services is probably nearer to being a true electronic patient
record than in any other medical discipline. Unfortunately, its
implementation is fragmented, underfunded, and without clear national
leadership or funding. It is vital that current initiatives are
coordinated, properly funded, and linked to similar developments
in child health information collection. The funding required
would not be great, given that most of the components necessary
for a successful system have already been developed.
AUTHOR
This memorandum is submitted by Prof P. J. Steer,
professor of obstetrics in the academic department of obstetrics
and gynaecology, Faculty of Medicine, Imperial College London,
based at the Chelsea and Westminster Hospital, 369 Fulham Road
SW10 9NH (tel. 020 8846 7892, email p.steer@imperial.ac.uk). He
has been involved in obstetric data collection since the late
1970s, and is currently chairman of the national user group of
the Ciconia maternity information system. He was the representative
of the Royal College of Obstetricians and Gynaecologists on the
project board of the Maternity Care Data Project, carried out
by the NHS Information Authority. He was also an adviser to the
Health Committee when it produced its second report into the maternity
services in 1992. He is willing to give oral evidence to the Health
Committee if requested. Although he is submitting this memorandum
as an individual, it draws heavily on the work of the perinatal
epidemiology research group within Imperial College.
MEMORANDUM
1. The use of computers to collect and store
clinical information has been extensively explored in maternity
care, and the electronic patient record is probably more highly
developed in obstetrics and midwifery than in any other clinical
discipline. Nationally, about 60% of maternity units use one of
three commercially available data collection systems, Euroking,
Protos, and Ciconia. All of these three systems collect large
amounts of useful and accurate clinical data. Unfortunately, only
two-thirds of this data finds its way into the Department of Health1,
making it impossible to generate meaningful national statistics.
This is mainly due to the fact that maternity data collection
systems interface poorly with the main hospital information systems,
from which data are despatched to the Department of Health. Nor
is the Department of Health allowed to accept data directly from
the maternity information systems. In addition, many Trusts use
different definitions for the various data items. This means data
could not be aggregated or compared on a national basis even if
it was collected centrally.
2. It was for this latter reason that the
Maternity Care Data Project was set up within the NHS Information
Authority. This work has resulted in a data dictionary of more
than 350 items (many with multiple options), which can be viewed
on the Information Authority website (address www.nhsia.nhs.uk/mcd).
Unfortunately, the Data Dictionary is currently difficult to use
because it is in alphabetical order. This is consistent with the
strict definition of a "dictionary", but it makes it
very difficult to find a particular topic. For example, the first
entry is "address" which is straightforward, but the
next is "administered pharmaceutical product" for which
one would normally look under "drug" or "medicine".
"Fetal blood sample pH" is listed not under "F"
but under "L"—for "lowest" fetal blood
pH during labour. Many items are therefore difficult to find unless
you know the initial word chosen for it. It seems that fulfilling
the "project initiation document" brief of producing
a "dictionary" has been more important than producing
a usable document.
3. There have been other problems, mainly
related to repeated cuts in the allocated budget, changes in the
project team allocated by the Information Authority, and a piece-meal
approach to planning implementation because of uncertainty about
long-term funding. The Information Authority is not responsible
for funding the introduction of Information Technology into Trusts
that do not currently have the electronic resources to progress
the implementation of the data dictionary. Moreover, now that
the initial data dictionary has been produced, it appears that
the Information Authority has no plans to continue its development.
Without continued development, the usefulness of the dictionary
will decline rapidly because it will not keep pace with developments
in clinical practice. I have reviewed these problems more thoroughly
in a recent editorial in the British Journal of Obstetrics And
Gynaecology2.
4. Those maternity units that currently
have maternity information systems often face problems maintaining
funding for their use and development. For example, in my own
Trust, the systems manager left two years ago and has never been
replaced, which has caused great problems in maintaining the functionality
of the system.
5. Within Imperial College, we have a project
group joint between the academic departments of obstetrics, paediatrics,
and epidemiology and public health. We call this the "MACHIS"
(Maternity And Child Health Information System) project. It aims
to link the collection of maternity data with data on the health
of the newborn, and of children up to the age of seven years.
This would not only facilitate clinical management, but also act
as a vital research resource with which to investigate the causes
of childhood handicap. Such research is important not only to
prevent handicap, but because of the fact that over half of all
medicolegal expenditure within the NHS relates to brain-damaged
babies. We have already set up a maternity data base of almost
half a million pregnancies (on which we have done much published
research), and have carried out pilot work to link this maternity
data with child health data. Unfortunately, the funding to maintain
this resource has disappeared subsequent to the recent major reduction
in expenditure on the Confidential Inquiry Into Stillbirths And
Deaths In Infancy (CESDI). Moreover, work on developing the database
is currently suspended because of the implementation of the Health
and Social Care Act, 1st June 2002. This states that routine clinical
data cannot be used for research purposes without the written
informed consent of all those contributing data. Clearly, it would
be impossible to obtain this retrospectively from half a million
women. We were continuing to add data at the rate of 40,000 pregnancies
per year from participating units within north-west London, however
this has now been suspended while we seek exemption from the Health
and Social Care Act. Ultimately, we would of course wish for all
women having maternity care to be asked to give fully informed
consent for the use of their data for research purposes. However,
given the current 20% national shortage of midwives, the imposition
of such an additional workload is currently not feasible.
6. Because of our concern that the initial
rapid pace of development of maternity information systems is
no longer being maintained, we recently hosted a conference of
interested professionals, linked to a survey of maternity and
child health information systems in southeast England. A full
copy of the findings of our survey, and the proceedings of the
conference, are available from the author on request. However,
our key findings were as follows:
Maternity
— 79% (46/58) of maternity units in
southeast England use some form of computerised information, either
a dedicated maternity information system or a maternity module
which is part of the hospital Patient Administration System (PAS),
but more than one in five still rely on poor quality paper records.
— All systems record clinically useful
information but there is substantial variation in the number of
data items recorded and the way in which data is entered and stored.
The dedicated maternity information systems contain more clinically
useful data than the maternity modules on Patient Administration
Systems.
— Downloads of individual level maternity
data from different systems were pooled successfully, demonstrating
that population-based data can be produced from this source.
Child health
— All child health services use a computer
system containing birth notification/vaccination and immunisation
details on every child resident within the boundaries of the trust.
— Data on child health outcomes is
problematic because the SPOTRN coding system is used (satisfactory
(S), problem (P), observed (O), treatment (T), referred (R) and
not done (N)). Although easy to use operationally, definitions
of codes have been lost over time and measuring and directly comparing
outcomes on a geographical basis is therefore difficult. Work
needs to be done to improve the coding of child health outcomes.
— Inadequate electronic links between
maternity systems and child health systems, a lack of clinician
involvement in system development and management, and the low
rate of completion of the NHS number were highlighted as major
problems.
— Our analysis of data quality in one
trust indicates that only two thirds of children have a completed
child health surveillance record at age six weeks and that the
completion rate is even less amongst very low birth weight children,
who are most at risk.
RECOMMENDATIONS
The computer infrastructure to support the collection
of information on maternity and child health for public health
purposes is largely in place and much of the information on maternal
health is already being collected at local level. However, if
these systems are to be used to their full potential the following
issues need to be addressed.
Standardised data sets for maternity and child
health
There is a clear need to define standardised
data sets for maternity and child health, and to implement these
nationally. The maternity care data project was a promising attempt
to meet this objective, however its ongoing development appears
to have been abandoned.
Universal use of systems
All maternity units, not just 80%, need to have
a system for electronic data capture if reliable national statistics
are to be collected.
ORGANISATIONAL SUPPORT
Effective information systems are dependent
on good organisation, need co-operation from clinicians, information
technology staff and support staff alike, require adequate training
for all staff in the use of the system and must have a person
with designated responsibility for co-ordinating data entry, data
analysis and maintenance.
Electronic links
Inadequate links between systems result in duplication
of data entry, wasting time and resources and increasing the risk
of data entry errors. New maternity systems should be interfaced
with the hospital PAS system. Links should also be established
between local maternity and child health systems, facilitating
seamless care of babies across organisational boundaries. Developing
links between child health and neonatal screening systems would
improve delivery and monitoring of the neonatal screening programme.
Minimum technical capabilities
— All systems should include error
traps and plausibility checks based on clinically accepted norms,
and include the functionality to extract downloads of individual
level data.
— There should be named co-ordinators
in trusts and health authorities
They would be responsible for co-ordinating
maternity and child health core data set returns, auditing data,
providing training in the use of system and data protection, collating
and linking individual level maternity/child health data in Health
Authority.
— Supra district collation
Information should also be collated at a supra
district level and an annual report produced.
— Allocation of NHS Number at birth
NHS numbers are now allocated at birth. They
should be included in the standardised maternity data set so that
appropriate linkage can be made between maternity data, and the
outcome for the health of child.
References:
1. Kenney N, Macfarlane A. Identifying problems
with data collection at a local level: survey of NHS maternity
units in England. BMJ 1999; 319: 619-22.
2. Steer P. The maternity care data project.
Br J Obstet Gynaecol 2002; 109: 852-5.
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