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Information about MBRRACE-UK for Mothers, Parents, Families and Health Service Users

This page provides information for mothers, parents, families and health services users whose information may be used during the programme of work MBRRACE-UK is carrying out.

Further information is available:

Overview

MBRRACE-UK is responsible for looking at information about mothers and babies who die during pregnancy or soon after in the UK.

Tragically every year in the UK 150-200 mothers die during pregnancy or in the year after, and over 4,000 babies die during the second half of pregnancy (late miscarriages), are stillborn or die in the first month after they are born. To prevent similar deaths in the future we need to understand why these mothers and babies died. Our work is supported by national pregnancy and baby loss charities across the UK.

MBRRACE-UK collects information about:

  • all mothers in the UK who die during pregnancy or in the 12 months after giving birth;
  • some mothers who experience a serious illnesses in pregnancy or soon after giving birth and recover;
  • all mothers in the UK of babies who miscarry late (from 20 weeks' gestation) or stillborn;
  • all mothers and babies where the baby dies in the first few weeks after being born;
  • some babies who have specific serious illnesses and recover.

We also use birth certificate information about all babies born and babies stillborn across the UK. We need this information to be able to calculate rates for mothers and babies who sadly die.

We also use the information about the mothers and babies who die to carry out special reviews called 'confidential enquiries'. In these enquiries experts review the care that was provided during pregnancy and afterwards to find out why the death occurred and whether different care may have made a difference.

Our aim is to understand if things went wrong with the care provided and to make national recommendations to improve care for all mothers and babies in the future.

To work out how often mothers and babies die and why, we need information about all mothers who are pregnant and give birth, and all babies being born. To do this we need to use data which includes identifiable information including name, date of birth and postcode. The reasons for this are explained below in the section 'What does MBRRACE-UK do?'.

The information we collect is also used by hospitals to improve their own services when they carry out their own review when babies die using the national Perinatal Mortality Review Tool (PMRT) – find out more information about the PMRT at: https://www.npeu.ox.ac.uk/mbrrace-uk/pmrt

Because of the large numbers of births (over 720,000) and deaths (over 4,000) each year it is not possible for us to get consent from every mother, parents and family to use their information. The national data opt-out in England is also not applied. We have special permission to use the information we need and this is explained below.

Please be assured that we make sure that all the information we include in our reports is anonymous.

More information about what we do and why is provided below – please read on if you want more details. There is a section on opting out if you do not wish your information to be used by MBRRACE-UK.

Opting out

In order to carry out the MBRRACE-UK work we have been given special permission to use identifiable information about all mothers and babies under very strict conditions of confidentiality and security.(MBRRACE-UK and confidentiality)

We have also applied to have the National Data Opt-Out for England waived. If you have applied via the National Data Opt-out not to have your health data used for anything other than your direct medical care this opt-out would normally be applied by Trusts and NHS Digital and they would not provide us with information about you. However, we have obtained special permission so that the National Data Opt-Out is not applied. More information about why we have applied for this special permission, the effect the National Data Opt-Out has on our findings and the special permission process is given below. (What does MBRRACE-UK do?)

You do have the right to opt-out of having your information used for these purposes. We would ask you to read all the information on this webpage before making a decision about opting out.

If you do then want to 'opt-out' of your information being used, you can let your midwife or doctor in the hospital know and they will tell us, or you can contact us directly:

In writing to:

MBRRACE-UK, National Perinatal Epidemiology Unit, University of Oxford, Old Road Campus, Headington, Oxford, OX3 7LF

Or

By telephone 01865 289715

Or

By email: mbrrace-uk@npeu.ox.ac.uk

More detailed information about the work of MBRRACE-UK and how we use information is given below.

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. The MBRRACE-UK programme is led from the University of Oxford and other members of the team work at the Universities of Leicester and Birmingham, Newcastle Hospitals NHS Foundation Trust, Chelsea and Westminster Hospital NHS Foundation Trust, and the stillbirth and neonatal death charity Sands.

What does MBRRACE-UK do?

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

To do this MBRRACE-UK is responsible for collecting information about and reviewing the care provided in the UK for:

  • all mothers who die during pregnancy or in the 12 months after giving birth;
  • some mothers who experience a serious illnesses in pregnancy or soon after giving birth and recover;
  • all mothers of babies who miscarry late (from 20 weeks' gestation) or are stillborn
  • all mothers and babies where the baby dies in the first few weeks after being born and some babies who have specific serious illnesses and recover.

We use birth certificate information about all births and stillbirths in England, Wales and Scotland. In Northern Ireland this information comes from the maternity care information system. We need the information about all babies who are born to be able to calculate rates for mothers and babies who sadly die. We then compare rates of mother and baby deaths across the UK. In our reports and on our website we present the rates for individual Trusts and Health Boards, and for other organisations such as local authorities, and health regions. (Perinatal mortality by organisation | MBRRACE-UK (le.ac.uk)).

The effect of applying the National Data Opt-Out in England: We have been able to show that if the National Data Opt-Out in England is applied to the information we receive, the rates we calculate, particularly for baby deaths in individual Trusts, are biased and lead to an underestimate of the rates in the affected Trusts. This means that if the National Data Opt-Out is applied, the results we will produce will be wrong. The extent which they are wrong will vary from Trust to Trust so that we are not able to make comparisons between Trusts to identify those with higher rates of baby deaths who need to do more about preventing baby deaths in their Trust.

Reviewing care through confidential enquiries: We also independently review the care received by of all of the mothers who die and some of the babies in a process called a 'confidential enquiry'. This is so we can understand if different care may have prevented their death. We also review the care of some mothers and babies who have a very serious illness but where things went well in the end and they recovered. The particular illnesses we focus on changes from year to year. We are able to compare the care provided when things went well and where they didn't and this also helps us to identify where care in the future might be improved.

The information we collect about the babies who die is also used by hospitals to improve their local care when they carry out their own review of baby deaths using the national Perinatal Mortality Review Tool (PMRT).

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

  • help us make sure that through our own MBRRACE-UK data collection systems we have identified all the deaths which have occurred and
  • work out the rates of stillbirths and infant deaths which take into account the different populations of mothers and babies different hospitals look after. With this information we can make comparisons between hospitals, regions and countries to identify where improvements in care are particularly 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 and with special permissions (MBRRACE-UK and confidentiality).

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

In the UK each year about 150-200 mothers die during pregnancy or in the year after giving birth. In the same period about 4,200 mothers have a late miscarriage (from 20 weeks' gestation), give birth to a stillborn baby or their baby dies in the first few weeks after birth.

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 during pregnancy or up to a year after the end of their pregnancy;
  • a small group of mothers who have had serious pregnancy complications but recover (for example, from sepsis*) or have factors that puts them and their pregnancy at a higher risk of a poor outcome (for example, mothers giving birth when they are 45 years and older);
  • and a small group of babies who have died or have had a serious illness or complication and recover.

*Sepsis, sometimes called septicaemia or 'blood poisoning', 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.

The information we collect about the mothers 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 or care after the pregnancy;
  • 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 mother and her baby including name, address, date of birth and postcode.

The detailed information collected about these mothers and babies is reviewed in a process called a 'confidential enquiry'. During the confidential enquiry, experts look at the care provided to each mother and her baby and they compare the quality of that care received with national agreed standards to identify if there are any improvements that may have made a difference. 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 deleted when the assessments are complete to ensure that all these assessments remain strictly confidential.

Through this process the expert assessors identify aspects of care which could be delivered better to improve care for future 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 reports do not contain any information that could lead to the identification of any individual mother or baby whose records were reviewed.

View the reports issued so far. https://www.npeu.ox.ac.uk/mbrrace-uk/reports

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 do not try to obtain the consent of individual mothers, parents and families (other than in Northern Ireland where the law is different) simply because of the large numbers. For example, we use information relating to all mothers giving birth across the UK, which is over 720,000 each year.

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

MBRRACE-UK and confidentiality

MBRRACE-UK has a legal duty to keep information we collect and use confidential and secure. We will not share any information that identifies individuals unless we have a legal basis to do this.

MBRRACE-UK holds all records that are supplied by NHS organisations in the strictest confidence. Mothers and babies have the right to confidentiality under the Data Protection Act (DPA) 2018, 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 2018 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

Information is held and processed for the purposes of the MBRRACE-UK work at the Universities of Oxford and Leicester.

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

The University of Leicester is registered with the Information Commissioner's office: Z6551415.

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 and extended to September 2022 by amendment), to receive copies of fully identifiable medical information from hospitals in England and Wales where: a mother has died during pregnancy or up to one year after the end of her pregnancy, or has suffered specific complications or serious illness and recovered, or a baby is a late miscarriage or stillborn, has died shortly after birth or has suffered specific complications or serious illness and recovered. MBRRACE-UK have also applied for and been granted approval through this route to receive and process limited information from NHS Digital 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 and evaluation purposes (Research and evaluation using MBRRACE-UK information).

In April 2022 we applied to and have been granted approval from the Secretary of State for Health, on the advice of the Heath Research Authority Confidentiality Advisory Group (CAG), to have the application of the National Data Opt-Out for England waived. This was made as an amendment application to our existing CAG approval15/CAG/0119.

MBRRACE-UK 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 mother has died during pregnancy or up to one year after the end of her pregnancy, or has suffered specific complications or serious illness and recovered, or a baby is stillborn, has died shortly after birth or has suffered specific complications or serious illness and recovered (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 originally these two separate approvals processes have been combined into a single process: Public Benefit and Privacy Panel for Health & Social Care approval: 1920-0131.

Can I access records held by MBRRACE-UK about me?

Individuals have the right to ask public bodies for copies of information held about them by that body. The University of Oxford is a public body. Mothers are able to ask for a copy of the information we hold about them, their pregnancy and their baby. Fathers and any others with parental responsibility are able to ask for a copy of the information we hold about their baby and where their baby died after they were born.

You can ask for this information in writing by letter or email.

MBRRACE-UK, National Perinatal Epidemiology Unit, University of Oxford, Old Road Campus, Headington, Oxford, OX3 7LF

mbrrace-uk@npeu.ox.ac.uk

Any links to identifiable information that MBRRACE-UK holds for the confidential enquiries is deleted when the confidential enquiry assessment is completed, so that we are not able to provide a copy of the detailed confidential enquiry review about individual mothers and babies.

Research and evaluation using MBRRACE-UK information

The information which we collect as part of the MBRRACE-UK programme is not collected primarily for research and health service evaluation purposes, however, given that we have such rich national information there are important research and evaluation questions that can be answered using the information we collect. With appropriate permissions in place researchers are able to apply to the Healthcare Quality Improvement Partnership (HQIP), who are the commissioners of the MBRRACE-UK programme and the data controller, to access aspects of the information we collect in order to conduct research or evaluation 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 collaboration are also researchers, we ourselves on occasion apply to use the information collected in the programme to carry out research or evaluation 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 from 1st April 2012 to 31st March 2015 was £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 extended from 1st April 2015 to 30th September 2017. In total over the five and half year period to 30th September 2017 the MNI-CORP budget was £4,173,954 which is equivalent to £758,900 per year.

In 2016 a competitive recommissioning process was undertaken; MBRRACE-UK were yet again the successful applicants. Due to funding cuts at NHS England the budget for the MBRRACE-UK programme was reduced by 15% and was 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. The programme of work required remained unchanged.

Due to the COVID-19 pandemic it was not possible for HQIP to undertake the competitive recommissioning that was due in 2020 and so the contract was extended with MBRRACE-UK until 30th September 2022; the contract sum for the one year extension was £884,387.

Updated: Wednesday, 22 June 2022 14:32 (v26)