Information from administrative records held by Government departments and agencies
Government departments and agencies hold information about people, which they use for administrative purposes. From time to time, we add information from these routine administrative records to the study data. We only do this if we have permission from you. Adding this information to the survey data helps to build up an even fuller picture of participants’ lives. This makes Child of the New Century even more valuable as it means researchers can use it to answer even more questions about society.
At previous surveys, your parents may have given permission to add your school and/or health records, and those of your brothers and sisters, to the survey data. For people under 16, parental permission is needed. They may have also given permission for their own health and/or economic records to be added. At the Age 17 survey, we asked you for the first time, to give your own permission to add other information about you.
As part of the Age 23 Survey, if you had not previously given your permission to add this information, we will ask your permission again.
If you have given us permission, we will send securely your personal details (such as name, sex, date of birth, address, NHS and National Insurance number – if available) to the government department or agency (or to a trusted third party employed by the government department or agency). We don’t send any other information about you, or any of your answers to the surveys. The government bodies or agencies only use these details to identify the records in their systems and then send the information from these records to us or to the data store where we deposit the study data. These departments and agencies are trusted to keep your personal details secure (and are likely to already have your personal details) and have robust systems to manage this.
When the information from the records is sent to us or to the data store, it is added to the information collected in the study, and made available to researchers under restricted access arrangements. Names, addresses, National Insurance and/or NHS numbers, are never disclosed to data stores or to researchers.
The permissions for adding other information can be changed or withdrawn at any time, without giving us any reason. This can be done by writing to us at: Child of the New Century, 20 Bedford Way, London, WC1H 0AL, or by emailing the CNC team at childnc@ucl.ac.uk.
Mortality information from the NHS
NHS Digital periodically informs us if study members have died. The files we receive from NHS Digital tell us when study members have died (month and year) and the cause of death. Receiving this information helps us ensure we do not try to contact people who have died. We also use it for important research. We do not ask your permission to receive this information but in order to obtain it we have to be granted special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and the NHS Digital Independent Group Advising on the Release of Data also need to grant us permission.
During surveys we have asked you for your permission to add information from your health records to the information you have provided us during surveys. We will receive information about your death even if you do not give us permission to add information from your health records. We will also continue to receive this information if you withdraw from the study, unless you request that the data you have provided to the study is deleted.
Please note that if you opt out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out then the NHS will not send us this information.
Information about where you live
We use your address (and previous addresses) to add information about where you live such as the local environment, weather, pollution and the facilities available (e.g. shops and green spaces). The information that we add may be about your local area as a whole, your street or sometimes your specific address. Where we live has a huge impact on many aspects of life, and so understanding more about your area and where you have lived previously is hugely useful for research. For example, research using Child of the New Century, has shown that for certain children, living near fast-food restaurants is associated with increased likelihood of being overweight.
All of the information provided to researchers is de-identified and does not allow individuals, or addresses to be identified.
We do not ask your permission to add this information because the data is not individual level information about you. Usually this information is publicly available and adding this information does not require us to share any of your personal information with any other organisations.
However, if you would prefer that we don’t add any information about your area to your study record then please let us know by writing free of charge to: Child of the New Century, 20 Bedford Way, London, WC1H 0AL, or by emailing the CNC team at childnc@ucl.ac.uk.
Other information
We may also add other information which is not about you individually, but is for example about the school that you went to.
Information about where you live
We use your address (and previous addresses) to add information about where you live. The information that we add may be about your local area as a whole, your street or sometimes your specific address.
So far we have added information about local pollution levels, the types of facilities in your area, access to green spaces, distances to local schools and distances between addresses you have lived at.
All of the information provided to researchers is de-identified and does not allow individuals, or addresses to be identified.
We do not ask your permission to add this kind of information because the data is not individual level information about you. Usually this information is publicly available and adding this information does not require us to share any of your personal information with any other organisations.
Information added from mortality records
NHS Digital periodically inform us if study members have died. The files we receive from NHS Digital tell us when study members have died (month and year) and the cause of death. Receiving this information helps us to ensure we do not try to contact people who have died. We also use it for important research.
In order to receive this information from the NHS we have to obtain special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and the NHS Digital Data Access Advisory Group.
During surveys we have asked you for your permission to add information from your health records to the information you have provided us during surveys. We will receive information about your death even if you do not give us permission to add information from your health records. We will also continue to receive this information if you withdraw from the study, unless you request that the data you have provided to the study is deleted.
Please note that if you opt out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out then the NHS will not send us this information.
Information added from administrative records
At previous surveys, your parents may have given permission to add your school and/or health records to the information we have collected about you as part of the survey. We also collected their consent to add information about some of your siblings, where relevant, and they may have also previously given permission for their own health and/or economic records to be added to the survey data.
If your parents agreed to this, we have already added some of this information to your survey data. Find out more about the information that we have added below:
Information added from routine education records
At the age 5 survey we asked permission from the parents of those of you in England to add information from your school records called the Foundation Stage Profile. When you were 7, we asked for their permission to collect information about your performance at school up to age 16. This includes Key Stages assessments and GCSEs in England and Wales, and Northern Ireland, and 5-14 levels and Standard Grades in Scotland. Your parents’ permission may have also been sought at the age 3 survey and/or the age 7 survey for accessing information from education records for your siblings (if relevant).
We have already added some information from these records. For those of you in England, Wales and Scotland, we have added some information from your primary school records. For those of you in England we have also added information from your secondary school records, including your GCSE results. We have not yet collected this information for your brothers or sisters (if relevant).
These records, combined with the information you’ve given us during the surveys, will allow researchers to better understand your experiences at school and help provide better education and training for your generation and future ones too.
Information added from routine health records
At the 9-months Survey, we asked your mother for her permission to add information about you from her pregnancy and birth hospital records and your birth registration records. If permission was obtained, these records have been accessed and made available to researchers. This information is of great benefit to the study as it gives researchers a more complete picture of your very early life conditions, which we know can have important long-term effects on development.
At the Age 3 Survey, we asked for your parent or guardian’s permission to add information about hospital admissions and treatments you might have received from birth to age 7 years. This information is held in routine records kept by the National Health Service. This permission was again sought at the Age 5 Survey, to ensure everyone had the opportunity to consent.
Then at the Age 7 Survey, your parents were asked for their permission to access information about you, and about your brothers and sisters (if relevant), held in routine health records from birth to age 14. These records relate to admissions or attendances at hospital, visits to a family doctor or other health professional, records of specific conditions, and prescriptions given. We also sought their consent for their own health records to be added.
If you gave us permission, we are now starting to get some information from your health records. For example, for those of you in England, Scotland and Wales, some information from your hospital records has been added. We are also applying to add some information from your mental health records. We have not yet collected this information for your siblings (if relevant) and for your parents we have only done this for those of you in Wales.
These records, combined with information you’ve given us during the surveys, will allow researchers to look in greater detail at what affects the health of children of the new century, and how policy makers might improve things for you and younger generations.
For those of you in England, NHS Digital hold all hospital admissions and outcomes data from the Hospital Episode Statistics (HES) dataset, and we will link this information to the information collected about you as part of the study after the Age 17 Survey. The information provided by NHS Digital may also include civil registration data from the Office for National Statistics. For those of you in Scotland and Wales your medical records are held by the Information Services Division (ISD) of NHS National Services Scotland and NHS Wales Informatics Service’s Information Services Division (ISD), which have already sent us your records. We are aiming to make them available to researchers soon. For those of you in Northern Ireland, it is the Northern Ireland Health and Social Care (HSC) that maintains this information. We have not yet applied to them for your records.
As part of the UK Longitudinal Linkage Collaboration (UK LLC) we are adding information from your NHS health records to support research into COVID-19. This includes your COVID-19 test results, if you had one, and your vaccination status. We are only doing this if you have given us permission to add information from your health records. UK LLC is working to widen the scope beyond COVID-19 research so that the data can be used for any research that benefits the public.
Information added from GP records
You may have heard in the news about NHS Digital’s plans to create a national central database of GP records. If you have given us permission to access your health records held by NHS, we will be asking NHS Digital to send us your records from this new GP database so we can add them to your survey data. We will not send any of your survey responses to the NHS.
If you don’t want us to add your data from the GP database or any other NHS records to your survey data, you can contact us to withdraw your permission. You can call us for free on 0800 092 1250 or email us at childnc@ucl.ac.uk.
Please note that opting out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out, is separate to opting out of us adding your health records to your survey data. If you have previously given CNC permission to add your health records to your survey data, then we will continue to do this. But if you don’t want this to happen, please let us know using the contact details above.
We would like to assure you that the data will never be used for commercial purposes and will only be used for research. The data will be made available via appropriate conditions of access to researchers via secure mechanisms such as the UK Data Service or similar organisations.
Information added from economic records
At the Age 7 Survey, your parents were asked for permission for their economic records to be added. This includes information about benefits, employment, earnings, tax credits and occupational pensions, and national insurance contributions. The consent for the linkage of information on benefits and employment was updated at the Age 11 Survey.
We are now in the process of adding this information from your parents’ economic records, kept by the Department for Work and Pensions (DWP) (and the Northern Ireland Department for Communities, Social Security Agency) and by Her Majesty’s Revenue and Customs (HMRC). This information will give us a better picture of your family economic circumstances without asking additional questions in the interview. It will allow us, for example, to examine in better detail the impact of family economic circumstances on your educational progress.
The linked information will be made available to researchers via the UK Data Service (UKDS) or a similar organisation, such as the UK Longitudinal Linkage Collaboration (UK LLC), who securely store and provide access to research data. Researchers based within University College London may be given access to the linked data through the highly secure UCL Data Safe Haven (DSH). Access to the data will only be granted in a secure research environment and after a successful application. Applications are assessed and approved by the CLS Data Access Committee team (and other bodies where appropriate). This is to make sure this information is used responsibly and safely.
You can withdraw your permission to add information from your administrative records at any time, without giving us a reason. If we have already added some of your information, it will continue to be used for research purposes only, however, we will not add any further information from your records.
To change your permissions, please email the CNC team at childnc@ucl.ac.uk or write to: Child of the New Century, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL.
Please note that opting out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out, is separate to opting out of us adding your health records to your survey data. If you have previously given CNC permission to add your health records to your survey data, then we will continue to do this. But if you don’t want this to happen, please let us know using the contact details above.
The administrative information we add relates to your past, present and future circumstances. We have not put an end date on the permissions that you give as we do not know exactly when we will add this information. Any permission you give for adding administrative information to the information we collect as part of the study will remain valid and we will collect these records on an ongoing basis – unless you tell us to stop.
As our aim is to follow your whole life’s journey, we have not set a time limit for how long we will keep your records.
