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.
If you have any children, as part of the Age 23 Survey we will ask you for your permission to add information about them from the following records:
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 information about your child 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 about your child in the survey.
Adding details from these records will help us understand much more about your child’s experiences and make the study an invaluable resource for researchers and policymakers, who use this information to improve public services.
Your permissions can be changed at any time without giving us a reason.
With your permission, we would like to add information about your child from the following records:
What information would we like to add?
We would like to add information from your child’s health records, including information about admissions and appointments at hospitals (such as dates of admission, discharge or attendance, diagnoses received, treatments given, surgical procedures), visits to their GP or other health professionals, specific conditions (such as cancer, diabetes, 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 child’s 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 child’s education records, including information about your child’s attendance at school, test results and characteristics of your child’s school.
These records are kept by:
Why add this information?
Adding other information from your child’s education records will allow us to carry out more detailed research on things like:
No. We will only provide government departments and agencies the details they need to accurately identify your child’s records, nothing more.
Your decision about whether or not to allow us to add information from your child’s records will not affect your access to benefits and services, including their education, health treatment, or any health insurance or benefits you may receive.
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 child’s 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 that we collect about your child, 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 child’s personal information is a ‘Task in the Public Interest’.
The privacy notice explains how we keep information safe and can be found here: www.childnc.net/privacy.
We provide your child’s personal details (name, address, sex and date of birth) 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 child’s personal details secure (and are likely to already have your child’s personal details) and have robust systems to manage this. They will use your child’s personal details to identify the correct records. They will de-identify your child’s 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 child’s personal details for any other purpose.
CLS or the data store will link your child’s records to your de-identified study responses using an anonymous ID. No information that identifies your child 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 your child from the data.
Government departments and agencies will only receive the personal details they need to establish an accurate match to your child’s records – such as name, address and date of birth – 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 child’s name and address 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 child’s name or address be connected to their linked information. We have strict controls about the way that information is added together to ensure that no one can work out who your child is. Information from different administrative records will not be included in the same data file if this would make it possible to identify your child.
You can change your mind about adding information from your child’s records or withdraw any of your permissions at any time, without giving us a reason. Any data we have already added will continue to be used unless you explicitly request that we delete it.
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.
No. You can agree for us to add information about your child 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 your interview which will outline the permissions you have given. You can also call the Child of the New Century study team to confirm this.
We would like to follow your child’s progress so we will add information from their health records on an ongoing basis until they are 14 and from their education records until they are 16, unless you tell us to stop.
When your child is older, perhaps even before they turn 14 or 16, we may ask you for permission to contact them directly, to ask if they are willing for us to continue to add this information. We would then only do this with their permission.
If you want to see the information held about your child 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.
