APPENDIX 11
Memorandum by Alison Macfarlane (MS 17)
1. BACKGROUND
City University's Department of Midwifery is
located within the St Bartholomew School of Nursing and Midwifery
at City University and forms part of the University's Institute
of Health Sciences. The Department, headed by Dora Opuko, is the
major provider of midwifery education and training in Central
and East London.
Research currently being undertaken in the Department
reflects both national priorities and the multicultural diversity
of the local population. Its national and international research
has an emphasis on questions relevant to the population of East
London. These include inequalities in perinatal health, use of
routinely collected maternity data and the history of maternity
care. Recently completed research includes the implications of
antenatal screening for midwifery practice, and the role of advocacy
services in the implementation of antenatal HIV testing in a multi-ethnic
population. The department is also involved in collaborative research
and development projects with local trusts. These include research
to gain an understanding of the high infant mortality in East
London and the development and evaluation of breastfeeding policy
and guidelines. Information about this work is available on request.
This memorandum focuses on the first of the
subcommittee's initial list of topics, the collection of data
from maternity units. It starts by outlining the main data collected
and then goes on to discuss specific problems which affect the
quality and completeness of the data, and ends by pointing to
other gaps and problems.
The Committee's decision to cover this topic
is welcome as such data are essential for monitoring the patterns
of maternity care provided and the impact of service changes and
implementation of new policies and agendas. At national level,
the data fall well short of what is needed. Many problems are
longstanding1 and others are being compounded by the rapid rate
of change in the NHS.
2. THE COLLECTION
OF DATA
FROM MATERNITY
UNITS
Data about births
Although many other data relevant to maternity
care are compiled nationally, there are three main data flows
following a birth.
Birth notification
All live births and all stillbirths at 24 or
more completed weeks of gestation must be notified by the midwife
or other birth attendant to the local Director of Public Health
within 36 hours of occurrence. In practice the information is
passed to the local child health system. Since October 2002, this
is being done electronically by a new process in which the baby
is allocated an NHS number at birth. Child health systems are
operational systems and the data from them are not analysed nationally,
with two exceptions. Babies' birthweights are passed to local
registrars of births and deaths, who pass them on to the Office
for National Statistics for analysis in conjunction with the data
recorded from parents at birth registration. If the child has
a notifiable congenital anomaly, a form containing relevant data
is sent either to the National Congenital Anomaly System, run
by the Office for National Statistics or to a local anomalies
register, in places where there is one.
Civil registration of births and deaths
All live births, all stillbirths at 24 or more
completed weeks of gestation and all deaths of babies born alive
must be registered by the next of kin or other informant at the
local Register Office with six weeks, three months and five days
respectively. Most of the information recorded is socio-demographic
and no clinical information is recorded for live births. In the
case of stillbirths and deaths, the informant is required to produce
a medical certificate of cause of stillbirth or death, signed
by a doctor who was present at the death or stillbirth or who
examined the dead baby. Anonymised data are analysed and published
by the Office for National Statistics.
Maternity Hospital Episode Statistics
Data about maternity care given at birth are
collected via additional items in a "maternity tail"
appended to the standard record of admitted patient care in the
Hospital Episode Statistics (HES). 2 These records are sent by
trusts from their patient administration systems to the Department
of Health. Recently the Department made arrangements for maternity
units whose maternity systems are not linked to their hospital's
patient administration system to send their maternity data directly
to the Department of Health.
OTHER RELATED
DATA COLLECTION
Data are also collected about deaths, terminations
of pregnancy and congenital anomalies.
Confidential enquiries
The Confidential Enquiry into Maternal Deaths
is a review of individual maternal deaths and the Confidential
Enquiry into Stillbirths and Deaths in Infancy reviews samples
of events. Most deaths are reported directly to the enquiries,
but some are ascertained through the registration system. The
enquiries are now run by the National Institute of Clinical Excellence
and from 1 April 2003 are being merged to form the Confidential
Enquiry into Maternal and Child Health.
Notification of termination of pregnancy under
the 1967 Abortion Act
All terminations must be notified to the Chief
Medical Officer on a form, data from which are analysed centrally.
If the termination involves in-patient or day care in an NHS hospital,
the episode will be recorded in the Hospital Episode Statistics,
but not if it takes place in a private hospital. Terminations
on medical grounds after 24 or more completed weeks of pregnancy
should also be registered as stillbirths.
Congenital anomalies
About half of the United Kingdom is covered
by local congenital anomaly registers. Most of those in England
and Wales share their data with the National Congenital Anomaly
System, operated by the Office for National Statistics. Where
there is no local register, congenital anomalies apparent at birth
are notified to the Office for National Statistics by the primary
care trust or other organisations running the local child health
system, using data from birth notification. Data about congenital
anomalies associated with stillbirth, death or termination of
pregnancy are included in the relevant systems, but in varying
degrees of detail.
3. PROBLEMS WITH
DATA COLLECTION
SYSTEMS
Maternity Hospital Episode Statistics
This system was implemented after the rest of
the Hospital Episode Statistics and for many years the data were
published belatedly. Since 2000, the Department has caught up,
publishing two statistical bulletins each of which contained data
for three years. The last of these, published in April 2002, contains
data up to 2000-01. The Department's statisticians have also been
working with a voluntary group, BirthChoiceUK to make the data
available simultaneously to the public on its web site3 and to
derive statistics for estimated numbers of "normal births".
As discussed in fuller detail in the Department's statistical
bulletins, other major problems remain and are outlined below.
Incompleteness
Maternity tail data for nearly a third of deliveries
in England do not reach the Department of Health. The most common
reasons for this shortfall are that some maternity units do not
have a computer system and others have stand-alone systems which
are not linked to their hospital's patient administration system.
A survey in 1998 funded by "Changing childbirth" found
that, although lacking at a national level, the relevant data
items were all recorded locally in maternity units. 4
More recent research by the University of Brighton
shows that the numbers of trusts with maternity systems have increased,
but further problems have arisen through trust mergers. 5, 6 As
many trusts are in the process of reprocuring computer systems
to support electronic patient records, it is important that they
use these opportunities to obtain facilities to collect maternity
data and to send and receive clinical information and statistical
data to and from local and national systems as appropriate. The
process of making such changes will not, of course, be problem
free.
Births at home and in the private sector
Unlike the rest of HES, Maternity HES covers
the relatively small numbers of births at home and the private
sector, but most of these records are missing. The extent of this
can be seen by comparison with birth registration statistics which
show numbers of births at home and in non-NHS institutions. Even
though the numbers of home births are relatively small, the controversies
surrounding them make it important to ensure that NHS systems
collect data about NHS home births. The Independent Midwives Association
is establishing a data collection system and has discussed its
plans with the Department's statisticians. On the other hand,
private hospitals do not usually submit data to Maternity HES.
Quality and consistency of data
The quality of individual data items in the
"maternity tail" is of variable quality and the 1998
survey showed suppliers of maternity IT systems did not use common
data definitions. In response to this problem, the NHS Information
Authority established the Maternity Care Data Project. As can
be seen on its web site, its aim is that "By April 2003,
to have standardised and consistent recording of data relating
to maternity and childbirth, for women and infants, within Electronic
Patient Record systems in all affected NHS organisations".
7
In 2000, the Maternity Care Data Dictionary
was developed and piloted in two maternity units. The report of
the pilot, completed in March 2001 and published in September
2001, concluded that, " . . . the dictionary provides a good
base for development of the Electronic Patient Record and for
provision of data that can be used to deliver demonstrable service
benefits." 8
The report identified further work needed before
the dictionary could be implemented if it was to achieve its aims
by 2003. "Further development and expansion of the dictionary
was recommended as organisations move towards Electronic Patient
Records and the need for additional data items is identified."
8 It is unclear from the project web site whether this is under
way or whether the project has been abandoned.
Updating the "minimum dataset" to reflect
changes in priorities and practice
The minimum dataset in the "maternity tail"
of the Hospital Episode Statistics was drawn up in the early 1980s.
Since then, many other minimum datasets have been drawn up for
various purposes by professional groups and others. Practice and
policies have changed and new issues have emerged such as the
need for socio-demographic data to monitor inequalities in access
to care and the desire for `normal birth' statistics. Clearly
it is time to revise the dataset.
Implementation of "NHS numbers for babies"
The NHS Numbers for Babies Project has been
hailed as a success in that it manages to issue NHS numbers to
new babies. 9 This is clearly of benefit to clinicians caring
for sick newborn babies. Unfortunately, though, it has been implemented
in a way which has had an adverse impact on two major national
data collections systems.
Because of systems problems, some birthweights
are no longer being passed from child health systems to local
registrars of births and deaths. This means that there are gaps
in the birth statistics compiled by the Office for National Statistics
and hence its infant mortality linked dataset. This has jeopardised
national statistics on birthweight and analyses of infant death
rates by birthweight.
Even if these systems problems can be resolved
another major problem remains. The minimum dataset passed from
maternity units to child health systems via the NHS number system
is much smaller than that passed under previous arrangements and
many key data items have been excluded. 10 This means that details
of congenital anomalies are no longer passed to child health systems
and cannot therefore be passed on to the National Congenital Anomalies
System.
Furthermore, as information which has been traditionally
passed to child health systems for clinical purposes is no longer
included in the new dataset, many trusts are still maintaining
earlier data flows in parallel. This causes additional work, especially
in those trusts which are still using manual systems.
4. OTHER EXAMPLES
OF GAPS
AND PROBLEMS
There are many other gaps in the data available
as well as examples of duplication of effort. They have been documented
in detail in Birth counts: statistics of pregnancy and childbirth.
Some examples are given below:
Antenatal and postnatal care outside hospital
Data collected in the past were unsatisfactory
and based only on "face to face contacts". The response
was to abolish these systems rather than to upgrade them, so no
data on the subject are now collected centrally. Thus, although
there is a considerable amount of information recorded in community
and general practice systems and in women held maternity records,
no nationally agreed and defined subset of statistical data is
compiled.
Miscarriages
If a woman is admitted to hospital after a miscarriage,
then the episode is recorded in the Hospital Episode Statistics,
but no pregnancy-specific data, such as gestational age are recorded.
Many women are not admitted to hospital. If a woman receives care
from a general practitioner, information about the pregnancy is
included in the relevant item of service claim, but the data are
not analysed. Instead, they are deleted once the claim is passed
for payment.
"Birth rate plus" and workforce planning
"Birth rate plus" is a system for
collecting data for workforce planning in maternity units. Units
use it from time to time and it involves collecting data manually
and then inputting them into a database. It is very labour intensive
and there is some overlap with data collected in other systems.
5. LACK OF
COMMUNICATION ABOUT
DATA COLLECTION
AND RELATED
ISSUES
The NHS Information Authority nor the Department
of Health's Information Policy Unit are mainly concerned with
information systems and issues related to statistical data do
not seem to have high priority. Communication with other parts
of the Department appears to be intermittent. There is seems to
be little sign of communication between policy staff and the staff
of the Department's statistical divisions or relevant staff at
the Office for National Statistics about data requirements for
new policy initiatives.
Although National Statistics is developing guidelines
for consulting users of data, at present only the statistical
outputs fall within the scope of National Statistics. Although
what comes out is clearly dependent on which data items are collected
and how, this is counterproductive. The way National Statistics
themes are constructed is unhelpful for maternity data, which
are divided between the "health and care" and "population
and migration" themes with data about social and geographical
inequalities coming under the "social and welfare" theme.
References:
1. Macfarlane AJ, Mugford M. Birth counts:
statistics of pregnancy and childbirth. Volume 1,Text. Second
edition. London: The Stationery Office, 2000.
2. Department of Health. NHS maternity
statistics, England: 1998-99 to 2000-01. Bulletin 2002/11.
London: Department of Health, 2002. http://www.doh.gov.uk/public/sb0211.htm.
3. Dodwell M, Armes R. Where to give birth:
www.BirthChoiceUK.com helps women make an informed choice. MIDIRS
Midwifery Digest (September 2001) 11; 3: 407-409.
4. Kenney N, Macfarlane A. Identifying problems
with data collection at a local level: survey of NHS maternity
units in England. BMJ3 1999; 319(7210): 619-22. http://bmj.com/cgi/content/full/319/7210/619/DC1.
5. Jones A, Henwood F, Hart A. EPRs and
maternity services—the challenge of client held records
and the blurring of boundaries. In Healthcare Computing 2002,
Guildford: British Computer Society, 2002.
6. Jones A, Henwood F, Hart A. `Electronic
patient records: the view from maternity.' British Journal
of Midwifery 2002; 10(10): 635-639.
7. NHS Information Authority. Maternity
Care Data Project. www.nhsia.nhs.uk/mcd. Accessed February
13 2003.
8. NHS Information Authority. Maternity
Care Data Project. Pilot Overview and Lessons Learned Report.
March 2001. http://www.nhsia.nhs.uk/mcd/pages/publications.asp
9. NHS Information Authority. NHS numbers
for babies: an overview. http://www.nhsia.nhs.uk/nn4b/pages/overview.asp.
Accessed February 13 2003.
10. NHS Information Authority. NHS numbers
for babies. birth notification data set. Version 4.0, 10.08.2001.
http://www.nhsia.nhs.uk/nn4b/pages/publications.asp
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