APPENDIX 43
Memorandum by James Chalmers (MS 52)
I am writing on behalf of the Information Committee
of the Faculty of Public Health Medicine to submit evidence to
the above inquiry. If required, appropriate members of this committee
will be able to give oral evidence.
SUMMARY
This evidence refers to the part of the remit
dealing with "the collection of data from maternity units".
There are concerns that, at present, maternity
data which are collected as part of the Hospital Episode Statistics
(HES) are inaccurate and incomplete. These problems relate to:
difficulties with integration of computer systems; variations
in data definitions and poor coordination between the relevant
national organisations.
In addition, the way the NHS Numbers for Babies
project has been implemented has had adverse effects on relevant
data systems operated by the Office for National Statistics.
1. INTRODUCTION
1.1 The civil registration system collects
national data about births and deaths and about the socio-demographic
characteristics of the parents, but not about maternity care.
Data concerning maternity care given at birth are collected via
items in a "maternity tail" appended to the standard
record of admitted patient care in the Hospital Episode Statistics
(HES). Unlike the rest of HES, Maternity HES also covers home
births and the private sector.
1.2 The following issues have been identified:
2. DATA FLOWS
2.1 A survey in 1998 funded by "Changing
childbirth" illustrated that one of the main reasons for
incompleteness and inaccuracy of maternity data was lack of data
flows between some maternity units via their hospital computer
systems to the Department of Health, even though the data items
in the "maternity tail" were all recorded locally in
maternity units. 1
2.2 The situation has not improved. Maternity
tails are available for only two thirds of deliveries in England.
The most common reasons for this 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 computer system. More
recent work by the University of Brighton shows that there have
been changes with moves towards the implementation of electronic
patient records, but this combined with trust mergers has caused
additional problems.
2.3 Furthermore, most of the records concerning
home births and births in private hospitals are missing. These
data are numerically relatively unimportant, as just over two
per cent of births take place at home and just under one per cent
in non-NHS institutions, it is important to ensure that NHS systems
collect community data about NHS home births.
3. DEFINITIONS
3.1 Another problem is inconsistency in
the definition of data items. In response to this, the NHS Information
Authority established the Maternity Care Data Project. As can
be seen on its web site, http://www.nhsia.nhs.uk/mcd, 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". In 2000, a Data Dictionary was developed
and piloted in two maternity units. The report of the pilot, published
in March 2001, showed that the Dictionary was a positive step
forward and identified further work needed before it could be
implemented. It appears that the project has now been abandoned,
but no reasons are given on the web site.
3.2 Another issue is that the minimum dataset
in the "maternity tail" of the Hospital Episode Statistics
was drawn up in the early 1980s and is in need of revision. Even
so, if we had the existing data items at national level for all
births, we would be better informed than we are with a third of
the births missing.
4. NHS NUMBERS
FOR BABIES
PROJECT
4.1 This project has been hailed as a success
in that it manages to issue NHS numbers to new babies. Unfortunately,
it has been implemented in a way which has had adverse effects
on two national data collections systems operated by the Office
for National Statistics.
4.2 Since 1975, birthweights recorded on
birth notifications have been passed via child health systems
to local registrars of births and deaths and thence to ONS for
inclusion in the dataset used for its infant mortality linkage.
Since the implementation of "NHS numbers for babies",
many birthweights are not reaching local registrars and therefore
the Office for National Statistics can no longer study infant
mortality for babies in different birthweight groups.
4.3 In addition, because of limitations
of the minimum dataset used in "NHS numbers for babies",
information on congenital anomalies is no longer passed to the
National Congenital Anomalies System.
5. POOR COORDINATION
5.1 There seems to be a need for improved
communications between the relevant departments of the NHS Information
Authority, the Department of Health's Information Policy Unit,
the Department of Health's performance management unit, the Department
of Health's statistical divisions and the Office for National
Statistics.
We recommend that the committee gives serious
consideration to these issues so that service planning can be
based on accurate, reliable and complete data.
February 2003
REFERENCE
1. Kenney N, Macfarlane A, Identifying
problems with data collection at a local level: survey of NHS
maternity units in England. BMJ 1999; 319: 619-622. http://bmj.com/cgi/content/full/319/7210/619
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