National Study of Health and Wellbeing: Linking data

What is linking data?

During your interview we will ask for your permission to link your questionnaire answers to some of your NHS health information which NHS Digital hold.

You do not have to give your permission to link your data to take part in the study. This is your choice and will not affect your participation otherwise.

The National Study of Health and Wellbeing Research team consists of NHS Digital, University of Leicester, and NatCen Social Research. If you give permission, NatCen Social Research will pass your name, address, and date of birth to NHS Digital who will carry out the data linkage. Your identity will only be known to certain members of the NatCen and University of Leicester (UoL) research teams and NHS Digital.

Why is linking data important?

Linking your answers to other data will help us build a more complete picture of your life. It will also let us answer many more important questions and make the information you share even more useful.

What data would we like to link to?

At the end of your interview, we will ask you for consent to link your survey answers to data from NHS Digital. This lets us add information to survey answers about hospital in-patient care, hospital out-patient care, hospital emergency care, maternity, mental health, social care, primary care (for example when you visit your GP), diagnostic care (for example any scans or ultrasounds you may have had), cancer diagnosis and treatment, community care and diabetes. Full details regarding the information used to link data and what it is linked to is provided to all participants as part of the consent process.  If you agree your name, address and date of birth, but no other information, will be passed to authorised individuals at NHS Digital in order for NHS Digital to trace and link this data about you.

You will be given a consent form to read and sign, with a copy for you to keep, which explains the type of data that is collected, the purpose that it is collected for, how we control access to this information, and how to withdraw your consent if you change your mind.

You can withdraw your consent to any one or all of the different types of data. You can withdraw your consent at any time outside of the interview by writing to us at NatCen Social Research, Kings House, 101-135 Kings Road, Brentwood, Essex CM14 4LX or emailing info@natcen.ac.uk. Please tell us which health records you no longer wish to consent to link; information to allow us to correctly identify you in our records (your name and date of birth and/or the reference on the permission form originally left with you); and an address, email address or telephone number in case we need any further information to complete your request.

If you have any questions about this process, please call us on NatCen Freephone 0800 652 4572.

How the process works

If you agree to data linkage we will pass on a few pieces of information to NHS Digital to enable them to identify your records (your name, address and date of birth).

They’ll use your details to find your records, then they will delete the personal information that we passed to them and pass the relevant information in your records back to NatCen.

We’ll link the data we receive from NHS Digital to your survey answers. We'll do this using an anonymous identifier to create a new set of data which contains no directly identifiable data. The de-identified linked dataset will include all the useful information from your survey answers linked to the administrative data and will be used by researchers  - but no one in the else apart from NatCen will know it’s about you.

Who would have access to my data?

Data will be used by the National Study of Health and Wellbeing Research Team consisting of researchers from NatCen Social Research, UoL and NHS Digital under restricted access arrangements (on a strict need to know basis), which make sure that the information is used responsibly and securely.

Access to the data for other qualified researchers can only be granted by NHS Digital’s Data Access Request Service (DARS, digital.nhs.uk/services/data-access-request-service-dars). The information will be completely confidential and will be used for research purposes only by academic or policy researchers under restricted access arrangements (on a strict need to know basis) which make sure the information is used responsibly and securely.

As we would like to look at long term trends in people’s health and wellbeing, we have not set a limit on how long we would like to keep your information. The survey has been running since 1993 and is very valuable for looking at how people’s health and wellbeing changes over time.