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Privacy notice

National Study of Health and Relationships

Who is doing the research?

This study is being carried out by NatCen Social Research (NatCen), University College London (UCL), the London School of Hygiene and Tropical Medicine (LSHTM), the University of Glasgow and Örebro University Hospital. The study is funded through the Wellcome Trust, Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR).

What is the study about?

This is a study on health and relationships in Britain and is one of the largest studies of its kind in the world. The study is sometimes also called Natsal – the National Survey of Sexual Attitudes and Lifestyles. It has taken place every 10 years since 1990 and the findings have been widely used by doctors, health service providers, policy makers and scientists to help plan health services and health education programmes. The last survey was in 2010, and we now need updated information to understand how attitudes and lifestyles have changed.

Who are the Data Controllers?

The Joint Data Controllers for Natsal are NatCen Social Research (NatCen), University College London (UCL), the London School of Hygiene and Tropical Medicine (LSHTM), the University of Glasgow and Örebro University Hospital. NatCen is the responsible point of contact and will collect the data for the study.

Do I have to take part?

Taking part is voluntary and if you do decide to take part, you can choose to answer as many or as few questions as you like. You can withdraw your consent at any point in time by contacting NatCen Social Research using the details below.

What is the legal basis for collecting this data?

The lawful basis NatCen relies on to process your data is the exercise of a legitimate interest. The lawful basis relied on by the academic collaborators for processing your data is performance of a task in the public interest.

What will happen to any information I give?

Any information given will be treated in confidence and we will handle your data in accordance with General Data Protection Regulation (GDPR). The survey findings will be anonymised and nothing we publish will identify you or your household.

Personal identifiers that can be used to identify you (such as your name and address) will be stored separately from your survey answers. Personal identifiers will not be shared outside NatCen, unless you agreed to have your survey answers linked to other datasets or if you agree to be contacted about future research studies.

We will create a dataset that combines your data with the information collected from other people who take part in the study. The dataset will not include information which could directly identify you. This de-identified data will be held as a resource for use by professional, academic and social policy researchers for research and statistical purposes only.

Occasionally, people who take part in Natsal might tell us things that raise concerns about their safety or the safety of others. If this happens, we may need to investigate this further as part of our ethical duty.

Linking survey answers to other information

We will ask for your consent to link your survey answers to other datasets about your health and education. 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 of Education (up to age 19).

If you agree, we 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.

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. 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.

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.

Recontact for future studies

In the future, we may contact you to invite you to take part in another study. We will only do this if you gave consent for this during your Natsal interview. If we contact you in future, you will be able to decide whether you want to participate in that research study at the time. If you want to remove your consent to be re-contacted for future studies, you can contact NatCen using the contact details below.

What happens to my biological samples?

If you give a biological sample, we will ask you separately for consent to store what is left over from your sample after the initial tests have been done. If you agree, any remaining sample may be used for future studies, for example, when new tests become available. Stored samples will only be used for future studies if all necessary approvals and permissions have been obtained in advance.

Any new studies will not involve analysis of human DNA or genetics. The sample will not be labelled with your identifying information and researchers who want to use the stored sample will have to apply for permission.

How long will you keep my data?

Natsal gives us very important information about how people’s health and relationships have changed over time. To help us do this, we would like to keep information about people’s health and relationships whilst the study continues, so we can look at trends over time. If you give permission for us to store any remaining biological sample, it will be stored until such time as it is used in future research studies. Due to the nature of research, we are unable to set any particular time limit on the retention of your data and samples, but we will keep it under regular review and ensure that neither are kept longer than is necessary. 

We will only retain personal identifiable data and biological samples to support the research project and findings. If you do not consent to: (1) linking your survey answers to other information, (2) recontact for future studies, and (3) biological sample storage, then we will delete your personal identifiers within 12 months of the end of the study. If you do not consent to the storage of biological samples, we will destroy any samples you give within 12 months of the end of the study.

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 below.  NatCen will inform the laboratory and the sample will be destroyed. We will also delete all data about you that is personally identifiable (e.g. contains information such as your name, address and date of birth), but we will not remove data from de-personalised datasets.

Where is my data stored?

NatCen will securely store your data, including personal identifiers, in line with ISO27001, ISO 20252 and Cyber Essentials Plus certification.

The de-identified data will be held as a resource for use by professional, academic and social policy researchers for research and statistical purposes only. This dataset will be held on the UCL Data Safe Haven, which enables secure storage, handling and analysing of data under restricted access arrangements.

Together with the previous Natsal survey datasets, a copy of the de-identified data will be securely deposited in the UK Data Archive, which is based at the University of Essex and operates under a licencing agreement. Researchers can register with the UK Data Archive to access Natsal data, which can only be used for genuine research for public interest and never for commercial gain.

Who can I contact?

If you have any queries, or want to request that we change or delete your information, contact us:

Katharine Sadler, Research Director
NatCen Social Research
Kings House, 101-135 Kings Road,
Brentwood, Essex, CM14 4LX
Tel: 0800 526 397
Email: info@natcen.ac.uk

Data Protection Officer
Email: dpo@natcen.ac.uk

Data Protection Officers are responsible for upholding your rights and making sure we process your information correctly.

If you would like to complain to the Data Protection Regulator, you can contact:

Information Commissioner’s Office
Wycliffe House, Water Lane
Wilmslow
SK9 5AF
Email: www.ico.org.uk/global/contact-us/email
Website: www.ico.org.uk