Information about MBRRACE-UK for Health Service Users

This page is intended to provide information for health services users whose information may be used during the programme of work MBRRACE-UK is carrying out.

Further information is available:

  • on the other MBRRACE-UK web-pages
  • by email: mbrrace-uk@npeu.ox.ac.uk
  • or by contacting the MBRRACE-UK office in Oxford: 01865 289715

Summary

MBRRACE-UK is collecting information about:

  • all mothers in the UK who die during pregnancy or in the 12 months after giving birth and some mothers who experience a serious illnesses in pregnancy or soon after giving birth;
  • all mothers in the UK of babies who are stillborn or whose baby dies in the first few weeks after being born or have specific serious illnesses;
  • all births and stillbirths across the UK.

The purpose is to examine what happens when things go wrong for mothers and babies in pregnancy, when women give birth and in the first few weeks after delivery.

Our aim is to identify what went wrong in these situations and why, so that we can make national recommendations about how care across the UK can be improved for all mothers and babies in the future.

To work out how often women and babies die and why, we need to use information about all women giving birth and all babies being born and we need to use information which includes personal information including name, date of birth and postcode. The reasons why we need to do this are explained below.

However, because of the numbers involved (about 800,000 women give birth each year in the UK) it is not possible for us to obtain the consent of every woman in the UK giving birth before we use their information. Please be reassured that we make sure that all information is anonymous in the results we present in our reports.

In order to carry out this work we have been given permission to use this information under very strict conditions of confidentiality and security.

Opting out

You do have the right to opt out of having your information used for these purposes. Please read all the information on this webpage before making a decision. If you then decide that you would prefer that your information is not used in this way please let us know by either writing to:

Professor Jenny Kurinczuk
MBRRACE-UK
National Perinatal Epidemiology Unit
Nuffield Department of Population Health
University of Oxford Old Road Campus
Headington, Oxford OX3 7LF

Or

Telephoning to speak to Prof Jenny Kurinczuk 01865 289700

Or

Emailing: jenny.kurinczuk@npeu.ox.ac.uk

More detailed information about the work of MBRRACE-UK and how we use information is given below. You can find out about:

What is MBRRACE-UK?

MBRRACE-UK is the group appointed by the Healthcare Quality Improvement Partnership to run the national Maternal, Newborn and Infant Clinical Outcome Review Programme. MBRRACE-UK is responsible for reviewing the care provided for:

  • all mothers who die during pregnancy or up to 12 months after giving birth;
  • mothers who experience particular, very serious illness in pregnancy which is sometimes called a maternal 'near-miss' illness;
  • all mothers whose pregnancy results in a stillbirth;
  • all mothers and babies when the baby dies in the first few weeks after birth;
  • babies who experience particular, very serious illness in the first few weeks after birth who may or may not recover.

The aim of MBRRACE-UK is to produce recommendations to improve the care  to ensure that services provided for mothers and babies are safe, of high quality, and focused on their needs.

What does MBRRACE-UK do?

MBRRACE-UK publishes reports for health care providers and health professionals that include recommendations for improvements in future care. To do this we must learn from both tragic events and where things went well.

MBRRACE-UK collects information when mothers have died, when babies have died and when mothers and babies have experienced serious complications and illness during pregnancy or shortly after birth.

To reach conclusions about the quality of care when tragic events occur or complications happen we also need to use information about pregnancies and births where everything has gone well, this allows us to make comparisons about the care provided. To do this we need to use some information about all women giving birth and their babies across the UK. This information comes from the civil registration of stillbirths and births in England, Wales and Scotland and from maternity care data systems in Northern Ireland.

With the exception of information from Northern Ireland, the information provided to MBRRACE-UK is fully identifiable, for example it includes names and dates of birth. We need this information to:

  • help us to make sure that through our own data collection systems we have identified all the cases which have occurred;
  • work out the rates of maternal deaths, stillbirths and infant deaths. With this information we can make comparisons between hospitals, regions and countries to identify where improvements in care are needed.

Because the information we receive is fully identifiable we keep it in a very secure place, access is highly restricted and it is only available to us under strict security measures.

What information does MBRRACE-UK collect and what happens to it?

In the UK each year about 200 mothers die during pregnancy or in the year after giving birth. In the same period about 4,200 women give birth to a stillborn baby and about 3,400 babies die before reaching their first birthday with nearly three-quarters of them dying before they are one month old.

We collect some information about all mothers and babies who die either during pregnancy or soon after birth. We collect this information directly from hospitals using a secure electronic data collection system. The information we collect is called 'surveillance' information which means that we collect the essential facts about each mother and baby who dies. This information enables us to monitor what is happening over time and between different hospitals, regions and the countries across the UK and to identify factors which are associated with a higher chance of the mother and/or baby dying.

We also collect more detailed information about the care provided to:

  • all mothers who die;
  • a group of mothers who have had serious pregnancy complications, for example in 2013-14 this was a sample of mothers with a condition called 'sepsis'*;
  • a group of babies who have had a serious illness or complication, for example in 2013-14 this was a condition called 'congenital diaphragmatic hernia'** and we included a sample of babies with this condition in the confidential enquiry.

*Sepsis, sometimes called septicaemia, is a life-threatening illness that can occur when the whole body has a reaction to the presence of infection. Sepsis is a medical emergency which needs urgent medical treatment.

**Congenital diaphragmatic hernia is a condition which occurs during the development of the baby during pregnancy where the diaphragm does not develop properly. The diaphragm is the muscle which separates the contents of the chest and the tummy and is used in breathing. When the diaphragm does not develop properly the contents of the tummy (the stomach and other organs) move into the chest and baby's lungs cannot develop properly.

The information we collect about the women and babies listed above includes:

  • Copies of hospital medical records, reports and test results;
  • Letters and medical records from other doctors and other health care organisations such as GPs involved in pregnancy care;
  • A description from local staff about the care provided to the woman and her baby in the form of written statements.

Once we receive this information it is anonymised which means that we remove any information relating to the identity of the women and her baby including name, address, date of birth.

The detailed information collected about these women and babies is then subject to a process called a 'confidential enquiry'. During the confidential enquiry expert assessors look at the care provided to each mother and her baby and they compare the quality of care received with national agreed standards of care to identify where improvements in case could be made. The specialist assessors who review each case do not know who the individual mothers and babies are, and any links to identifiable information that MBRRACE-UK holds are destroyed when the assessments are complete and the reports are published to ensure that all these assessments remain strictly confidential.

Through this process the expert assessors identify aspects of care which could be done better in the future to improve care for mothers and babies. By gathering these assessments together MBRRACE-UK produce reports with recommendations for changes to practice and improvements in care to help avoid complications and tragedies in the future. We are careful to ensure that the final report does not contain any information that could lead to the identification of any individual mother or baby whose records were used in creating the report.

View the reports issued so far.

The other serious illnesses and causes of death which we are investigating in confidential enquires are: (i) women who are treated and recover from very serious mental illness after giving birth - we will report on these findings in December 2017; (ii) pregnant women who have artificial heart valves - we reported on these findings in December 2016; (iii) women with epilepsy who experience serious fits during pregnancy - we will report on these findings in December 2017; (iv) babies from a full term pregnancy who die during pregnancy before labour starts - we reported on these findings in November 2015; and (v) babies from a full term pregnancy who die during labour or die up to one month after birth from problems which occurred during labour - we will report on these findings in November 2017.

Will I be told if my health records are used by MBRRACE-UK?

MBRRACE-UK will not contact you directly and you will not be informed if your records are used by MBRRACE-UK. Your NHS records will not detail if any of your information has been requested by MBRRACE-UK. We will not try to obtain the consent of the individual mothers involved (other than in Northern Ireland where the law is different) simply because of the large numbers of individuals involved. We will be using information relating to all women giving birth across the UK, which in 2013 was nearly 800,000. We do not have the resources to obtain consent from every individual woman.

For Northern Ireland we will not receive any identifiable information. This information will all be handled by the Northern Ireland Maternal and Child Health (NIMACH) office who will only pass anonymous information to MBRRACE-UK. Consent will be obtained by the NIMACH office to enable us to include information about mothers and babies with serious illness or complications who recover.

MBRRACE-UK and confidentiality

MBRRACE-UK has a legal duty to keep information about you confidential and secure. We will not share any information that identifies you for any reason, unless we have to do this by law.

MBRRACE-UK holds all records that are supplied by NHS organisations in the strictest confidence. Women and babies have the right to confidentiality under the Data Protection Act (DPA) 1998, the Human Rights Act 1998 and the common law duty of confidence; the Disability Discrimination and the Race Relations Acts also may apply.

The Data Protection Act 1998 requires organisations to notify the Information Commissioner of the purposes for which they process personal information. The details are publicly available from:

The Information Commissioner,
Wycliffe House,
Water Lane,
Wilmslow, Cheshire, SK9 5AF
or at ico.gov.uk

The University of Oxford is registered with the Information Commissioner's office: Z575783X.

MBRRACE-UK have applied for and been granted approval from the Secretary of State for Health, on the advice of the Heath Research Authority Confidentiality Advisory Group (ECC 5-05(f)/2012 for the period October 2012 to March 2017; and 15/CAG/0119 for the period May 2015 to September 2021 March 2017), to receive copies of fully identifiable medical information from hospitals in England and Wales where a women has died during pregnancy or after delivery, or has suffered specific complications or serious illness, or a baby is stillborn, has died shortly after birth or has suffered specific complications or serious illness. MBRRACE-UK have also applied for and been granted approval through this route to receive and process limited information which contains identifiable data about all births and stillbirths in England and Wales. The approval we have also extends to using the information collected for specific and approved research purposes (please see below).

MBRRACE-UK have applied for and been granted approval from the NHS Caldicott Guardian for Scotland to receive copies of fully identifiable medical information from hospitals in Scotland where a women has died during pregnancy or after delivery, or has suffered specific complications or serious illness, or a baby is stillborn, has died shortly after birth or has suffered specific complications or serious illness (2013-05 update 2014-06). MBRRACE-UK have also applied for and been granted approval through this route to receive and process limited information which contains identifiable data about all births and stillbirths in Scotland (PAC 16/14). Of note since MBRRACE-UK obtained these approvals these two separate approvals processes have been combined into a single process: Public Benefit and Privacy Panel For Health & Social Care.

have died cases or any births. This information will all be handled by the Northern Ireland Maternal and Child Health (NIMACH) office who will only pass anonymous information to MBRRACE-UK. Consent will be obtained by the NIMACH office to enable us to include the cases of women with serious illness.

Can I access records held by the NHS about me?

You have the right to ask for a copy of all records held about you. If you wish to request a copy of your medical records your request must be made in writing to the NHS organisation holding your information. There may be a charge to have a printed copy of the information supplied to you. Any links to identifiable information about you that MBRRACE-UK holds will be destroyed when the confidential enquiry reports are published, so that we are not able to provide any details of the Confidential Enquiries about individual cases.

Research using MBRRACE-UK information

The information which we collect as part of the MBRRACE-UK programme is not collected primarily for research purposes, however, given that we have such rich national information there are important research questions that can be answered using the information we collect. With appropriate research permissions in place researchers are able to apply to the Healthcare Quality Improvement Partnership (HQIP), the commissioners of the MBRRACE-UK programme, to access aspects of the information we collect in order to conduct research studies designed to address important questions about the health and care of mothers and babies, and the outcomes of pregnancy. As the members of the MBRRACE-UK collaborator are all researchers we ourselves, on occasion, apply to use the information collected in the programme to carry out research studies; again in order to do this we have to have all the appropriate research permissions in place and we also have to apply to HQIP to use the MBRRACE-UK information for these purposes.  

MBRRACE-UK funding

The Maternal, Newborn and Infant Clinical Outcome Review Programme (MNI-CORP), delivered by MBRRACE-UK, is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England, NHS Wales, the Health and Social care division of the Scottish government, the Northern Ireland Department of Health, Social Services and Public Safety (DHSSPS), the States of Jersey, Guernsey, and the Isle of Man.

The total contract sum for delivering the MNI-CORP programme over the three years to 31st March 2015 wasis £2,081,660 that is, £693,886 per year. An additional uplift of £200,000 was provided in this period and the overall contract was has been extended from 1st April 2015 to 30th September 31st March 2017. In total over the five and half year period to 30th September 2017 the MNI-CORP budget is is £4,173,954 which is equivalent to £758,900 9,099 per year. In 2016 a competitive recommissioning process was undertaken; MBRRACE-UK were yet again the successful bidders. Due to funding cuts at NHS England the budget for the MBRRACE-UK programme was reduced by 15% and now stands at a total of £2,597,681 over the four year period to 30th September 2021 which equates to £649,420 per year for four years.