Information for mothers, parents and families
This page provides information for mothers, parents and families whose information may be used during the programme of work MBRRACE-UK is carrying out.
MBRRACE-UK works with a number of charities and other organisations that can offer support and resources. Links to these groups are available on our collaboration page.
What is MBRRACE-UK?
The MBRRACE-UK programme is responsible for monitoring and learning from the deaths of women and babies who died during or soon after pregnancy. Additionally, MBRRACE-UK carries out special investigations into serious health issues affecting women and babies. Since serious health problems and near-miss situations happen more often than deaths, insights from these occurrences can quickly lead to improvements in care.
It is MBRRACE-UK's belief that understanding why women and babies die or develop serious complications can help prevent similar events in the future.
To accomplish its aims, MBRRACE-UK collects information about:
- all women in the UK and the Republic of Ireland who die during pregnancy or in the year after the end of pregnancy;
- some mothers in the UK who experience a serious illnesses in pregnancy or soon after giving pregnancy and recover;
- all mothers 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.
This information is used to calculate the rates for women and babies who die and to carry out special reviews called 'confidential enquiries'. These reviews look at the care that was provided to women and babies during and after pregnancy to better understand why the death or serious health problem occurred and whether different care may have made a difference. Based on these reviews, MBRRACE-UK makes national recommendations in order to improve care for women and babies in the future.
The information MBRRACE-UK collects is also used by hospitals to improve their own services when they carry out reviews using the national Perinatal Mortality Review Tool (PMRT).
MBRRACE-UK's use of personal data
With the exception of information from Northern Ireland and the Republic of Ireland, data collected and used by MBRRACE-UK includes personal information such as names, dates of birth and postcode.
We need this personal data to cross-check the death of each woman and baby against other national databases and to exclude duplicate records. This ensures that all eligible deaths are reported to MBRRACE-UK. This information also allows MBRRACE-UK to consider different populations of mothers and babies including those from different ethnic backgrounds and levels of deprivation. It also provides insight into known risk factors and health, social and lifestyle factors that may be associated with the stillbirth, neonatal death or the death of women in pregnancy or shortly after. For perinatal deaths, identifiable information also allows for comparisons between hospitals, regions and countries to identify where improvements in care are particularly needed.
MBRRACE-UK has a legal duty to keep all information confidential and secure. All information used my MBRRACE-UK is collected directly from hospitals using a secure electronic data collection system. Access to the system is highly restricted and information is not shared with any individuals or groups aside from MBRRACE-UK staff. Any medical records received are fully anonymised prior to review. This means that experts reviewing the notes will not be able to see any information relating to the identity of the woman or her baby.
More information about MBRRACE-UK's legal basis for the collection and use of personal data can be found here: npeu.ox.ac.uk/mbrrace-uk/privacy-notice
Consent and opting out
MBRRACE-UK does not directly contact or inform parents, partners or families directly if they are included in MBRRACE-UK reports. Because of the large numbers of births and deaths each year it is not possible to get consent from every mother, parents and family in order to use their information. MBRRACE-UK has special permission to use identifiable information about women and babies under very strict conditions of confidentiality and security.
The one exception to this is in Northern Ireland where the law is different. All information used by MBRRACE-UK is first handled by the Northern Ireland Maternal and Child Health (NIMACH) office. For mothers and babies with serious illness or complications who recover, NIMACH obtains consent in order for MBRRACE-UK to use their information in morbidity confidential enquiries.
The National Data Opt-Out in England is also not applied to information collected by MBRRACE-UK. Individuals can still request that their personal information be removed from the MBRRACE-UK dataset by contacting MBRRACE-UK. MBRRACE-UK honours these individual requests.
Accessing personal data held by MBRRACE-UK
Individuals have a right to ask public bodies, such as the University of Oxford, for copies of information held about them using a subject access request. Mothers are able to ask for a copy of the information held about them, their pregnancy and their baby. Fathers or any others with parental responsibility are also able to ask for a copy of the information held about their baby.
Individuals can ask for this information in writing by letter addressed to MBRRACE-UK, National Perinatal Epidemiology Unit, University of Oxford, Old Road Campus, Headington, Oxford, OX3 7LF or by emailing MBRRACE-UK.
Any links to identifiable information that MBRRACE-UK holds for the purposes of the confidential enquiries are deleted when the confidential enquiry assessment is completed. As such, MBRRACE-UK may not be able to provide a copy of detailed confidential enquiry reviews after a certain time period.
Research using MBRRACE-UK data
MBRRACE-UK does not collect information primarily for the purposes of research but recognise that there are important research questions that can be answered using the information collected. With appropriate permissions, researchers are able to apply to access MBRRACE-UK data for research or evaluation studies designed to address important questions about the health and care of mothers and babies, and the outcomes of pregnancy.
Applications for data access must go through the Healthcare Quality Improvement Partnership (HQIP).