Research Privacy Notices

‘Births and their outcome: analysing the daily, weekly and yearly cycles and their implications for the NHS’

Privacy notice

‘Births and their outcome: analysing the daily, weekly and yearly cycles and their implications for the NHS’ (DARS-NIC-10094-P6P4B 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.

This data is 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 has 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.

Confidentiality

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. It includes a lay summary.

Other information about the project can be found on this web site and a summary can be found on Administrative Data Research UK’s website. More detailed publications can be found in City Research Online.

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.

Your options

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:

Principal Investigator

Email: A.J.Macfarlane@city.ac.uk

Phone 0207 040 5832

Mail: Professor Alison Macfarlane, Centre for Maternal and Child Health Research, School of Health & Psychological 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 see City’s Data Protection Policy.

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 at Dataprotection@city.ac.uk. 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).

Reference: DARS-NIC-10094-P6P4B-v4.2 amended

Housing, family and environmental risk factors for hospital admissions in children

Patient Notification/Fair Processing Notice

Who are we?

We are researchers at University College London (UCL). UCL is the data controller for this project, together with City, University of London.

Why are we doing this project?

Emergency hospital admission rates in children aged less than 15 years have increased by 30% since 2000. These admissions are highly stressful for children and their families, as well as costly for the National Health Service (NHS).

In this project, we will look at whether certain household, parental and environmental factors are associated with the probability of a child being admitted to hospital.

This will tell us areas where investments in public health, or efforts to improve healthcare access are most likely to lead to improvements in child health, which would reduce the need for emergency hospital admissions.

We will focus on the following two areas:

1. We will examine how building characteristics (such as damp and mould), household overcrowding, and air pollution exposure during pregnancy are associated with the probability of hospital admissions for respiratory infections in babies
2. We will determine whether children whose parents were born abroad, or are less proficient in English, have similar access to primary and community health services as children whose parents were born in the UK.

We will use statistical techniques to show how these factors are associated with the probability of hospital admissions in children. Our methods will take into account parents’ socio-economic circumstances, and whether children have underlying health problems.

The data used in this project

We will use a database containing birth and death registration and hospital records (Hospital Episode Statistics) for 6.7 million children. The children were all born in England between 2005 and 2014.

The data were linked by researchers from City, University of London for a previous study, see our Fair Processing Notice. They are held on a secure server at the Office for National Statistics (ONS).

The data held include the baby’s sex, birth weight and gestational age, hospital diagnoses and operations for babies and mothers, and parents’ country of birth.

The ONS will link this existing database to 2011 Census data from mothers and their partners (if any), which means information about housing, mother’s and her partner’s education and knowledge of English/English proficiency (self-assessed from the Census data) proficiency will be available for this research project.

The existing database will also be linked to data on outdoor air pollution (from the Department for Environment, Food and Rural Affairs), and building standards data (from Energy Performance Certificates) and small-area level data on tobacco expenditure; these data have been modelled at Census output area level by CACI Ltd. A Census output area has on average 125 households. This will be done by NHS Digital, who will link the cohort to postcode histories held in the Personal Demographic Service. UCL will then link the postcodes histories to the air pollution, buildings and tobacco expenditure data, before removing the postcodes.

Confidentiality

All data are kept on highly secure servers at the ONS and can only be accessed by a small number of accredited individuals.

The current birth database does not contain any identifying information, such as names, addresses or NHS numbers.

Patient Notification/Fair Processing Notice

The identifying information (such as NHS numbers) are kept in a separate database, away from the health data, and cannot be accessed by researchers, only a small number of ONS staff. The linkage to Census data will be carried out by ONS staff using secure methods which are described in detail on the ONS website.

The air pollution, tobacco expenditure and building characteristics data, which do not include any information about individuals, will be linked to the existing birth database using the mothers’ and babies’ address histories. This will be done by NHS Digital staff who do not have access to any clinical data. ONS will securely transfer mother and child identifying information (including NHS numbers) to NHS Digital who will link the mothers and babies to their address histories held in the Personal Demographic Service. These address histories will be returned to the ONS and kept on a secure server where they will be linked to the air pollution, tobacco expenditure and building standards data (available at address or postcode levels) by UCL. Once UCL have linked the postcode histories to the environmental data on air pollution, tobacco expenditure and building standards, the postcode histories will be deleted.

At no point will your or your child’s names, NHS numbers, or full addresses, be kept together with health, Census, air pollution or buildings data. Researchers will not be able to see this identifying information, only de-personalised (referred to as pseudonymised) data about health, family and living conditions. Researchers will have access to dates of birth and death; once the key information needed for analyses have been derived, access to dates of birth and death will be restricted for researchers.

All staff working on this project have a legal duty of confidentiality to protect personal information about mothers and children. All staff working with the data have had special training in keeping data confidential and secure.

We do not solely make decisions about analyses based on automatic processing of data.

Where to find the results

Our results will be published in open access journals so that they can be read online and downloaded for free. We will announce these publications and provide lay summaries of our results on the Child Health Informatics Group website.

All publications will also be released to the press via the UCL Media Engagement Office.

Legal and ethical permissions

The legal basis for processing personal data for this purpose data at UCL falls under Article 6(1)(e) of the General Data Protection Regulations (GDPR), i.e. the “public task” of healthcare research. It also falls under Article 9(2)(j), “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”.

Personally identifying information (including names, addresses, dates of birth and NHS numbers) will be processed by the Office for National Statistics in order to link the data.

This is conducted under section 251 of the National Health Services Act (2006) and its Regulations, the Health Service (Control of Patient Information) Regulations (2002), with approval from the Secretary of State for Health and Social Care via the Confidentiality Advisory Group (CAG reference: 18/CAG/0159).

Ethical approval for this research was granted by the Health Research Authority's London – Queen’s Square Research Ethics Committee (reference: 18/LO/1514).

Data storage and retention

Different parts of the data may be subject to different retention periods as agreed with the different data providers (ONS and NHS Digital). These retention periods are still being negotiated but are expected to be until at least 2022.

Retention of data is necessary to ensure that analyses can be checked and to adhere to guidelines on reproducibility of research.

Your options

If you would like to know more about the project and how we using your data, please contact us at childhealthdata@ucl.ac.uk. You may also contact the principal investigator, Dr Pia Hardelid, by phone or post, via the UCL Great Ormond Street Institute of Child Health.

You are entitled to object to your data, or your child’s data (if you are their legal guardian), being used for this research. If you do not want us to use your or your child’s data, please get in touch using the contact details above. However, note that the UCL research team will not be able to identify you and cannot remove your records from the study directly at your request.

You have the right to tell NHS Digital if you do not want the information you provide to them to be used beyond the purpose of providing healthcare. This is known as an "opt-out". Please visit NHS Digital’s website for further details. Your choice will not affect the health care you receive.

University College London is one of the Data Controllers for this study. If you have any questions about how UCL uses personal data, you can contact the Data Protection Officer: data-protection@ucl.ac.uk.

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.