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Linking data

More information about data we would like to link to your questionnaire answers

What is linking data?

During your interview we will ask for your permission to link your questionnaire answers to other administrative data (for example, your health records).

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 ELSA Research team consists of several collaborators: University College London (UCL), Institute for Fiscal Studies (IFS), University of Manchester (UoM), and NatCen Social Research. In addition, other leading UK researchers may at times be invited to be a part of the ELSA Research Team for a specific purpose, which would enable them to access the linked de-identified health data for research purposes.

NatCen Social Research are responsible for working with NHS Digital to get the data securely linked, and will be the only organisation with access to fields that can be used to identify you.

 

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?

When you take part in ELSA we will ask you for consent to link to data from the following government departments and organisations:

  • NHS Digital: ELSA data to be linked to your Hospital Episode Statistics, mortality data including broad cause of death, (supplied by NHS Digital on behalf of the Office for National Statistics) and cancer data (supplied by NHS Digital on behalf of Public Health England). We will send your ELSA member ID, NHS Number, Date of Birth, postcode and gender in order for NHS Digital to trace and link this data about you.
  • HM Revenue and Customs: ELSA data to be linked to your National Insurance Records.
  • The Department of Work and Pensions: ELSA data to be linked to administrative records on receipt of state benefits.

The first time you take part in ELSA, you will be asked to provide consent for us to link to each of the types of data listed above. You can choose to consent to all of them, or some of them, or none of them. For each type of link, 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.

After that first time, you will be asked at each interview whether you still consent to each type of link. These questions are asked at the end of the main interview.  

You can withdraw your consent to any one or all of the different types of data. You can also 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

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 4574.

 

How the process works

This is how the process works for ELSA:

    • If you agree to data linkage you will be asked to provide a few pieces of information that can be used to identify your records, like your name, address, date of birth,  National Insurance number and National Health number.
    • We’ll separate these details from your other answers and pass them over to the government department or organisation who hold your records.
    • They’ll use your details to find your records, then they will delete the personal information that we passed to them.
    • We’ll link the data we receive from NHS Digital, HM Revenue and Customs, and the Department of Work and Pensions to your survey answers. We'll do this using the ELSA member ID number to create a new set of data which contains no directly identifiable data. This de-identified linked dataset is further shared with the rest of the ELSA Research team. This will include all the useful information from your survey answers linked to the administrative data - but no one in the ELSA Research team (apart from NatCen Social Research) will know it’s about you.

 

For more detailed information about the process, visit the ELSA project website.