Government departments and agencies hold information about us which they use for routine administrative purposes. From time to time, we add information from these routine administrative records to the information you have given us as part of the study.
As part of the Age 17 Survey in 2018 we asked you for your permission to add information from the following records to the information you have given us in surveys over the years:
As part of the Age 23 Survey, we will ask you for any permissions not previously given.
We will provide you with a booklet which explains more about this. Please take the time to read it and make your decision.
We will only add the information that you give us permission to.
You can also find out more by watching our video.
The information in these records is more detailed than the information we collect from you in the survey.
Adding information stored in administrative records to the information you have given in the study can help us understand much more about your experiences.
It helps us build a more complete picture of your life and makes the study an invaluable resource for researchers and policy makers, who use this information to improve public services.
You may have already given permission for us to add this information. This time, we are only asking about permissions you have not previously given.
Your permissions can be changed at any time without giving us a reason. This applies to any permissions you may have given in the past.
With your permission we would like to add information from the following records:
What information would we like to add?
Health records include admissions and appointments at hospital (such as dates of admission, discharge or attendance, diagnoses received, treatments given, surgical procedures), visits to your GP or other health professionals (such as a midwife), specific conditions (such as cancer, diabetes or mental illness) and prescriptions given.
The medical and health records for all patients using NHS health services throughout their lives are kept by:
Why add this information?
Adding information from your health records allows researchers to carry out more detailed studies on things like:
What information would we like to add?
We would like to add information from your education and training records after age 16. This includes information on:
These records are kept by:
It is useful to add information from all these records, even if you did not continue in education after 16.
Why add this information?
Adding other information from your education records will allow us to carry out more detailed research on things like:
What information would we like to add?
Records kept by the Department for Work and Pensions (for England, Scotland and Wales) and Northern Ireland Department for Communities include information about benefit claims and participation in employment programmes.
Records kept for all four UK countries by His Majesty’s Revenue and Customs (HMRC) include information about employment, earnings, tax credits, occupational pensions and National Insurance contributions.
Why add this information?
Adding extra information about your earnings and benefits from your economic records will allow us to carry out more detailed research on things like:
What information would we like to add?
Police and criminal justice records include information on police arrests, official cautions, convictions and sentences.
Police and criminal justice records for those above the minimum age of criminal responsibility are held by:
Why add this information?
Adding extra information about your police and criminal justice records will allow us to carry out more detailed research on things like:
This evidence can be used to develop policies and practices that help keep individuals and communities safe.
The information collected by Child of the New Century, including information from administrative records, is collected and used for research purposes only.
No. We will only provide government departments and agencies the details they need to accurately identify your records, nothing more.
Your decision about whether or not to allow us to add information from your records will not affect your health treatment or any health insurance; it will not affect your benefits or tax, and this is not a way for the police to find things out about you that they didn’t already know.
Access to the linked data will only be given to researchers who can demonstrate that they will be competent and safe users, and that their project is in the public interest and not run for profit making purposes.
We take extensive care to keep your information safe.
It is encrypted and sent via secure transfer systems, in line with the most up to date security rules and procedures.
All information we collect about you, including information from administrative records, is treated in the strictest confidence in accordance with the Data Protection Act 2018 and General Data Protection Regulation (GDPR).
The information is collected and used for research purposes only. The lawful basis on which we process your personal information is a ‘Task in the Public Interest’.
The privacy notice explains how we keep your information safe and can be found here: www.childnc.net/privacy
We provide your personal details (name, address, sex, date of birth, NHS or National Insurance Number (NI) – if held) to:
No other information collected in the survey or held by CLS is passed to these departments, agencies, or to any trusted third party.
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. They will use your personal details to identify the correct records. They will de-identify your records and send them to CLS or to the data store where your survey responses are held. CLS will be the data controller of this information.
The government departments and agencies will not use your personal details for any other purpose.
CLS or the data store will link your records to your de-identified study responses using an anonymous ID. No information that identifies you will be provided to the data store.
The linked survey and administrative information will be made available to researchers under restricted access conditions. The data store staff and research users cannot identify you from the data.
Government departments and agencies will only receive the personal details they need to establish an accurate match to your records – such as name, address, date of birth, NI or NHS number (if available) – nothing more. After your records have been identified, these details will be deleted. No information that you have given us during the study will be added to your administrative records.
The linked survey and administrative information will be used for research purposes only. As with your survey answers, this information will only be used by professional researchers for non-commercial research and statistics.
Your name, address, NHS number and National Insurance number are never given to researchers.
The linked information will be made available to researchers via the UK Data Service (UKDS) or a similar organisation who securely store and provide access to research data. Researchers based within UCL may be given access to the linked data though 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, assessed and approved by the Child of the New Century team and by the named government department (if required). This is to make sure this information is used responsibly and safely.
No. At no point will your name or address be connected to your linked information. We have strict controls about the way that information is added together to ensure that no one can work out who you are. Information from different administrative records will not be included in the same data file if this would make it possible to identify you.
You can change your mind about adding information from these records or withdraw any of your permissions at any time, without giving us a reason. This applies to any permissions that you may have given in the past. If we have already added some of your information, because you previously gave us permission to, it will continue to be to be available to researchers along with your survey responses, unless you request that we delete it. However, we will not add any further information from your records.
To change your permissions, please email the Child of the New Century 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.
As part of the Age 23 Survey, we will only ask about permissions which you have not previously given.
The permissions you give now will supplement the permissions you gave at the Age 17 Survey. Any permissions will remain valid unless they are withdrawn.
No. You can agree for us to add information from all of the records we ask about, from just some of the records or to add nothing at all – it’s your choice.
Yes. We will send you an email (or letter if requested) after you have completed the survey which will outline the permissions you have given. You can also call the Child of the New Century study team to confirm this.
The information we would like to 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.
If you want to see the information held about you by any of the data holding government departments or agencies, you need to enquire directly with the individual organisations. We would be happy to provide you with their contact details.
