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Data linkage information leaflet

National Study of Health and Relationships 2022 (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, education and 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 and education. Data linkage will allow us to find out more about how health and experiences during school 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?

NHS 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 of medication and dose).
  • 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.

Employment, benefits and  earnings information which includes:

  • Where you work and the type of job you do.
  • How much you earn.
  • Any benefits you may get to help you out.
  • How much you pay in National Insurance and tax.

It does not include information from your bank account(s).

How does data linkage work?

To make sure your records are accurately identified, NatCen Social Research will securely transfer your personal details (name, address, sex and date of birth) to the organisations that hold your health, education and other administrative records. These can be NHS organisations and government departments in the UK, and also University and Statistics Authorities which are tasked with the secure use of records in research.

Once your records have been identified your personal details will be removed and replaced with a unique study identifier. This will then allow the organisations holding your health, education and other administrative records to make a copy of the relevant parts of your record, to depersonalise it so it doesn’t include your identifiers. These will then be combined with your survey answers and transferred to a secure research environment so that they can be used for research and statistical purposes by approved users. Your personal details will be kept separately from health, education and other administrative records, and researchers analysing the data will not be able to identify individuals within the data.

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

These linked data will be held on a secure research server which enables secure storage, handling and analysing of data under restricted access arrangements. It will then be used as a resource by approved professional, academic and social policy researchers for research and statistical purposes only. Access to the data by these researchers will only be granted through a separate written 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 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 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. Information on the organisations that hold this data, perform the linkage, and how your data are then used and stored is available in the privacy notice.

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 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. This is called the National Data Opt Out programme. The consent you provide here overrides this Opt Out. This means you can opt-out in general, but continue providing data to this study (and any others you have consented to). It also means you will need to let the study know if you want to withdraw your consent to data linkage.

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, University College London, the London School of Hygiene and Tropical Medicine and the University of Glasgow.