‘Births and their outcome: analysing the daily, weekly and yearly cycles and their implications for the NHS’ was originally funded by the National Institute for Health Research’s HS&DR Programme, Project 12/136/93. We have now obtained further funding from the Economic and Social Research Council to do some of the analyses which there was not time to complete previously.
We are accessing national data about over seven million births, derived from data recorded at civil registration of births and deaths and statutory notification of births in England and Wales, linked to Hospital Episode Statistics Data for England provided by NHS Digital, formerly the Health and Social Care Information Centre and corresponding data for Wales, provided by the NHS Wales Informatics Service. We are using these data to produce statistics in ways which make it impossible to identify you or your child.
The Data Controller is City, University of London, but the data are not stored at the University. They are stored in secure facilities at the Office for National Statistics, which acts as Data Processor. The University of Oxford has also been supporting the linkage work as a Data Processor on behalf of City, University of London. Subject to approvals by City, University of London, ONS and NHS Digital, access to the data may be granted to third parties for independent research. In such cases, they will not have access to identifiable data.
The data – linkage and analyses
The data consist of individual records from births from January 1 2005 onwards and deaths of these children or their mothers. The records which can be accessed by City staff do not include names and addresses. They include NHS Numbers which are used to link the data and are then removed from the data used for analysis. They also include dates of birth as these are essential for analysis, but data are not released from the secure facilities unless they are in disclosure controlled aggregated tables.
City is working with the Office for National Statistics (ONS), which routinely uses the information collected when a birth or death is registered, to produce statistics about births and infant deaths in England and Wales.
ONS worked with researchers at City, University of London to link this information to data extracted from NHS hospital records of births in England and In Wales. These include information about mothers and babies recorded at birth, such as length of pregnancy, time of birth, method of birth and conditions diagnosed in mothers and babies. This has been further linked to data about any subsequent admissions to hospital of either the mother or the baby after birth. Linking birth registration data to this NHS information will produce fuller information about births and their outcome to analyse for research and statistical purposes to provide more detailed information about the care given at birth than is recorded in any system individually. Fuller analyses based on these linked records can be used to inform decisions about the provision of maternity care.
The legal basis on which City processes personal information is on the basis of public task (Article 6(1)(e) of the GDPR). Where we process special category data, such as health information, the additional lawful basis we rely on is processing for archiving in the public interest, scientific or historical research purposes or statistical purposes (Article 9(2)(J) of the GDPR).
The questions this information will help us to answer relate to the need to ensure a consistent 24-hour maternity service, which is a high priority. This linked database was set up for a special project to see how numbers of births and maternity care for mothers and babies vary over time and whether there is any difference at night, during weekends or at holiday times. We aim to answer the following questions:
1. How does the number of births vary by time of day, day of the week and day of the year?
2. Does the way labour starts and how babies are born change according to the time of day and the day of the week?
3. Do the size and type of maternity unit and variations in medical and midwifery staffing affect these patterns of birth?
4. Is there any difference by time of day, day of week and time of year of birth in stillbirth and infant death rates or in the extent to which babies or their mothers are readmitted to hospital? If so, does this relate to the length of the pregnancy or how the baby is delivered?
Taken as a whole these analyses were designed to be undertaken in the public interest under Article 6(1)(e) of the General Data Protection Regulation in response to concern about the possibility of hourly and daily differences in the quality and safety of maternity and related care. Analyses since the 1970s have shown that maternity outcomes have apparently differed by day of the year, day of the week and time of day. The project aimed to understand the reasons for this. Public and patient involvement is a key part of this work and consultations with service users showed considerable interest and support along with confidence that individuals were not going to be identified in a database of over seven million births held in a secure setting.
We are not using individuals’ names and addresses to do this project. The information accessed includes NHS numbers, dates of birth and postcodes. This is being held electronically on a secure system at ONS and access is only given to authorised users. All our project members have a legal duty to keep information about individual mothers and their babies confidential. City adheres to the principles of medical confidentiality. Personal data, as defined in the Data protection Act 1998, will not be disclosed by City or ONS to third parties except for other authorised researchers who have obtained the necessary permissions to process the data in secure conditions. These obligations shall continue without limit in time.
Where to find the results so far
Our report on the project so far has been published by the National Institute for Health Research and can be found at https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/1213693/#/. It includes a lay summary. Other information about the project can be found on this web site and a summary can be found on ONS’ web site. [link to follow] More detailed publications can be found in City Research Online http://openaccess.city.ac.uk/
Automated decision making and Profiling
We do not use your information for automated decision making or profiling that has legal or similarly significant effects on you.
We have permission from the NHS Research Authority under Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 to process patient identifiable data without consent for these purposes. You are entitled to opt out of having your data used in this way should you wish. If you do not want us to use your information or information for any child for whom you are the legal guardian for these purposes, please contact Alison Macfarlane, using the contact details below.
If you would like to know more about the project and how we are using the data, please contact:
Phone: 0207 040 5832
Mail: Professor Alison Macfarlane, Centre for Maternal and Child Health Research, School of Health Sciences, City, University of London. Northampton Square EC1V 0HB
If you have any questions about how City handles your personal information, or you wish to find out about your rights, please visit City’s Privacy Notice. You will also be able to find out more information about how City processes your information and how you can contact City’s Data Protection Officer via email firstname.lastname@example.org Where there is inconsistency between those documents and this notice, this notice shall prevail.
If you raise a concern with City about the way it has handled your personal information, you are entitled to lodge a concern with a supervisory authority. In the UK, the supervisory authority is the Information Commissioner’s Office (ICO).