Natsal: Data linkage information leaflet

National Study of Health and Relationships (Natsal) 2022-23

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, education and/or other administrative 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, education and background information. Data linkage will allow us to find out more about how health, experiences during school and your circumstances are related to the topics covered in the survey, and to build a more complete picture of the health services people use.

What am I being asked to give permission for?

If you agree to data linkage, we plan to link your survey answers to:

Patient health information which includes:

Records held by your GP (General Practitioner): Information about visits to your GP including dates, symptoms and diagnoses, treatments, prescriptions and vaccination records, referrals to hospital and specialist care, and health-related behaviours.
Hospital records: This includes information about visits to accident & emergency, admissions to hospital and outpatient appointments.
Community care: Details of community care you may receive, whether it is for a particular illness, family planning and contraception or for reasons to do with your mental health.
Prescriptions: Records about the prescriptions you have been given (the date, type and dose of medication).
Vaccinations: Records about which vaccinations you have had and when.
Cancer records: Cancer screening, diagnoses and treatments.

Your patient health records may contain information some people find particularly sensitive, for example about mental health or sexual and reproductive health issues.

Education information which includes:

Records about your attendance.
Test and exam results.
Special educational needs and disabilities.
Eligibility for free school meals.
University and college admissions.
Educational outcomes.

Administrative and survey datasets held by the ONS (the Office for National Statistics) for research and statistical purposes.

How does data linkage work?

1. NatCen Social Research will securely transfer your unique ID and personal identifiers (name, address, sex and date of birth) to the government departments and agencies that hold your health, education, administrative and other survey records.

2. Once your records have been identified, your personal identifiers will be removed. Your unique ID and health, education, administrative and/or other survey records will be transferred to a secure research environment.

3. NatCen Social Research will securely transfer your unique ID and study data to the secure research environment where the research team will link the information from your health, education, administrative and other survey records to your survey data using your unique ID.

4. The linked information containing survey data and administrative information is made available in the secure research environment by approved users. Your personal identifiers are never included in the linked data so researchers analysing the data never see them.

What will the research be used for and who will use it?

These linked data will be held as a resource by approved professional, academic and social policy researchers for research, educational and statistical purposes only. Access to the data by these researchers will only be granted through a separate application and training process. Permission will only be given to researchers who can explain the potential impact of the research and its wider value for society. The information will be stored on a secure research server, 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 (Natsal) 2022-23 will be treated by all parties/organisations in the strictest confidence and in accordance with the Data Protection Act 2018 and the UK General Data Protection Regulation (GDPR). A Privacy Notice providing information on the organisations that hold this data, perform the linkage, and how your data are then used and stored is available at natcen.ac.uk/natsalstudy/privacy-policy.

What if I change my mind?

You can withdraw your consent to data linkage by contacting NatCen Social Research using the details on this page. 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.

In England and Wales, NHS patients have a right to opt-out of the research use of their health records. The consent you provide here is separate from the National Data opt-out programme.

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 also write to NatCen Social Research, 35 Northampton Square, London, EC1V 0AX; or email natsal@natcen.ac.uk.

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.