How the UK LLC works

What is the UK LLC?

The UK Longitudinal Linkage Collaboration (UK LLC) is a national research resource created in 2020 to support COVID-19 research. It has since expanded to a wide range of health and social research across the UK. 

The CSS Biobank will partner with the UK LLC. Joining the UK LLC means data can be used safely, responsibly, and for public interest research. 

The video below explains what the UK Longitudinal Linkage Collaboration (UK LLC) is and how it works An Overview of UK Longitudinal Linkage Collaboration – YouTube 

Who Runs the UK LLC? 

The UK LLC is delivered by expert teams from: 

• University of Bristol and University of Edinburgh (core leadership) 

• Swansea University (data infrastructure and security, and the Data Processor for the University of Bristol) 

• University of Leicester (environmental data expertise) 

• The NHS and the Office for National Statistics (ONS) 

The UK LLC’s activities are reviewed by both a panel of data experts and data owners, as well as a panel of public contributors.

UK LLC has made a set of key promises about how data will be handled, which they are committed to following: Our Promises to Study Participants | UK Longitudinal Linkage Collaboration.

You can read more about the UK LLC and public involvement by visiting the UK LLC website Involving the public | UK Longitudinal Linkage Collaboration. 

Who Funds the UK LLC? 

The UK LLC is funded by: 

• UK Research and Innovation (UKRI) 

• The Economic and Social Research Council (ESRC) 

• The Medical Research Council (MRC) 

This funding supports ongoing research that aims to improve health and wellbeing for everyone in the UK. 

Why Combine Data via the UK LLC? 

The UK LLC brings together anonymised data from over 20 UK longitudinal studies, including the CSS Biobank, into one secure system. This helps researchers: 

• Study long-term health and wellbeing 

• Link information across systems (e.g. health, education, or environment) 

• Answer big questions that no single study could explore alone 

How Is Data Protected? 

• All data are stored securely in a Trusted Research Environment (TRE). This system ensures researchers never see participant names or personal identifiers such as date of birth and address

• All CSS Biobank data we share with UK LLC is pseudonymised and access is strictly controlled 

• Every research project using CSS Biobank data must be reviewed and approved 

Learn more about how data is linked and protected

What Information Might a Researcher Access in Participants’ Health Records?

A lot of information that is very useful to TwinsUK researchers is held in your official health records. Health records include those held by your general practitioner (GP) and hospital records, mental health data, cancer registrations and mortality data held by NHS organisations. 

We are bound by the same rules of confidentiality as your GP – your name is never linked to the information taken from your records when used by researchers. Such records may contain information some people find particularly sensitive to disclose openly, for example about mental health or sexual health issues. 

Your patient health information includes: 

• Details of visits to your doctor or GP practice, diagnoses made and any treatment you were given. 

• If you’ve ever been to hospital; why you were there and what happened whilst you were there. This includes visits to accident & emergency, if you were admitted to hospital for care or if you received treatment as an outpatient (e.g. to see a specialist consultant or nurse). 

• Details of community care you may receive, whether it is for a particular illness or for reasons to do with your mental health. 

Participant Rights 

Participants always have the right to: 

• Know how their data is being used 

• Ask questions or request changes 

• Withdraw from future use of their data at any time 

We only combine participants’ CSS Biobank study data with health record data using the UK LLC when we have the person’s permission (consent) to access their health records. We asked participants this when they joined the CSS Biobank.  

Participants can withdraw consent for us to use their CSS Biobank data for health record linkage or withdraw from the CSS Biobank altogether by contacting us Contact Us – COVID Symptom Study Biobank.  

Who Can Apply to Use the CSS Biobank Data through the UK LLC? 

Access to anonymised, linked data through the UK LLC is very carefully controlled. 

Only UK-based researchers can apply, and they must be: 

• Accredited by the Office for National Statistics (ONS)

• Reviewed and approved by the UK LLC access panel 

• Approved by the CSS Biobank study team 

How do research projects gain approval to use CSS Biobank data?

If a researcher wants to use unlinked study data (data that hasn’t been joined with health records), they must also go through a strict approval process by the CSS Biobank study data access committee. 

No one can access the data without permission, and projects must be for research that benefits the public in order to be approved. 

The UK LLC has a Data Use Register Data Use Register | UK Longitudinal Linkage Collaboration where you can view all approved and declined applications, with summaries about the projects. 

What Will Data Linkage be Used For? 

With participant involvement, researchers will be able to: 

• Learn more about the short- and long-term effects of COVID-19 

• Understand how people used health services during and after COVID, and where support was missing 

• Look at how people’s life situations have affected their health and wellbeing during and after the pandemic 

• Help design public health support that works better for everyone, including those who are often left out 

Glossary

Anonymised: All participant identifiers (e.g name and date of birth) have been permanently removed and cannot be re-identified at any point.

Pseudonymised: All participant identifiers are removed and replaced with pseudonyms. Only through access to a separate code, which is strictly controlled, can this data be re-identified.