Select Committee on Health Written Evidence


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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