Data linkage information leaflet
National Study of Health and Relationships 2021 (Natsal): Development Study
Thank you for taking part in the interview. We would also like your help with the next part of the study that involves adding information from your health and education records to the answers you have provided in the study – this is a process called data linkage.
You don’t have to agree to data linkage if you prefer not to but, of course, we very much hope you will agree, as this is an important part of this survey.
Why consent to data linkage?
Your time is important to us and as a result we have tried to limit the number of questions we ask in this study, particularly around your health, use of health and care services and education. To allow us to find out more about how your health affects your relationships, and to build a complete picture of the health services you use and your experiences during school, we would like to add some details from your health and education records to the answers you have provided in the study.
What am I being asked to give permission for?
If you agree to data linkage, we plan to access your:
- Hospital records: Hospital visits, including dates of admission and consultations, treatments received, and referrals made. These health records will come from Hospital Episode Statistics data held by NHS Digital.
- Primary Care (GP records): Information about diagnoses and symptoms, vaccinations, medications, referrals to hospital and specialist care, and health-related behaviours. These health records will come from the Clinical Practice Research Datalink held by the Department of Health and Social Care.
- National Pupil Database records: Information about participation in school and test and exam results. These education and training records are kept by the Department for Education (up to age 19).
NatCen Social Research will send your name, address, sex and date of birth to NHS Digital in order for them to perform the data linkage. This will be done using a secure data transfer method. After the data have been linked, NHS Digital will remove your personal identifiers and create a unique study identifier. This will then allow NHS Digital to send your health records back to the Natsal research team for research and statistical purposes. A similar process will be used for your education data, where your personal identifiers will be sent to the Department for Education who will carry out the linkage, remove your identifiers from the dataset and securely transfer it back to us.
What will the research be used for and who will use it?
These linked data will be used by the Natsal research team and only accessed on the UCL Data Safe Haven, which enables secure storage, handling and analysing of data under restricted access arrangements.
Like your study responses, the additional information resulting from the data linkage will be held as a resource for use by professional, academic and social policy researchers for research and statistical purposes only. Access to the data for other qualified researchers will only be granted through a separate written application process. Permission will only be given to academic or policy researchers who can explain the potential impact of the research and its wider value for society. The information will be provided under restricted access arrangements which make sure that the information is used responsibly and safely.
Names and addresses will never be included in the research dataset, nor any published results, and so no individual will be identifiable from the research. Furthermore, all information collected and linked to the National Study of Health and Relationships 2021 (Natsal) will be treated by all parties/organisations in the strictest confidence and in accordance with the General Data Protection Regulation (GDPR) 2018 and the Data Protection Act 2018. A privacy notice providing information on how your data are used and stored is available at natcen.ac.uk/natsal-study/privacy-policy.
What if I change my mind?
You can withdraw your consent to participate in the study at any point in time by contacting NatCen Social Research using the details overleaf. We will remove data about you that is personally identifiable (e.g. contains information such as your name, address), but we will not remove data from de-personalised datasets.
As we would like to look at long term trends in people’s health, we have not set a limit on how long we would like to keep this linked research dataset.
Contact us for further information
Please ask the interviewer about anything that concerns you or you can call the Natsal team on 0800 652 4568.
You can call the Natsal team on 0800 652 4568; write to NatCen Social Research, 35 Northampton Square, London, EC1V 0AX; or email firstname.lastname@example.org.
The Natsal Research team is from NatCen Social Research (NatCen), University College London (UCL), the London School of Hygiene and Tropical Medicine (LSHTM) and the University of Glasgow.