A new way of working with longitudinal data is by combining data from many Longitudinal Population Studies to allow researchers to look at more people across diverse population groups, occupations and other factors to improve health and wellbeing and service provision. To do this, many studies need to put relevant data into a highly secure computing environment, known as either a Trusted Research Environment (TRE) or a Safe Data Haven (SDH) or a Secure Data Environment (SDE).
TRACK-COVID is a partner with UK Longitudinal Linkage Collaboration, a Trusted Research Environment set up to bring data together for research in the public good.
Who is UK Longitudinal Linkage Collaboration (UK LLC)?
UK LLC is the national Trusted Research Environment for data linkage in longitudinal research. It is run by the Universities of Bristol and Edinburgh, in collaboration with University College London (UCL), Swansea University, University of Leicester and City St George’s, University of London. Their purpose is to bring together data about Longitudinal Population Study (LPS) participants that has been collected by their LPS or as part of their wider care and support and link it to participants’ health and other data.
The University of Bristol is the Data Controller for UK LLC and SeRP UK at Swansea University is the contracted Data Processor to University of Bristol for UK LLC. SeRP UK is a leader in providing this type of secure research server in the UK and internationally.
How does this work?
TRACK-COVID provides UK LLC with de-identified copies of selected data. This includes questionnaire data, antibody results and linked health record data. We remain the owner and Data Controller and retain control of how the data is used in the UK LLC Trusted Research Environment. This makes sure the principles of TRACK-COVID are upheld.
TRACK-COVID provides a list of personal data (e.g. name, date of birth, address) to NHS Digital Health and Care Wales (DHCW). They are a NHS Trusted Third Party, which means they have the official approvals in place to handle data in this way. They do not see your study data. They then facilitate linkages by sending your personal identifiers to linked data owners [and UK LLC’s place-based (e.g. air pollution, noise pollution) modellers for processing]. These organisations extract and send de-identified datasets to SeRP UK who bring them together with your survey datasets. They then deposit your de-identified data into the UK LLC TRE. Through this split process, NHS Digital Health and Care Wales can only see your personal identifiers and SeRP UK and UK LLC can only see de-identified data about you.
Linked data owners:
- NHS England
- Office for National Statistics in England and Wales
- SAIL databank
Where and how is TRACK-COVID data stored at UK LLC?
TRACK-COVID data is stored on secure servers at SeRP UK, which are controlled by the University of Bristol and physically located at Swansea University. The servers are managed to information security best practice standards (including ISO 27001) and are regularly audited by external experts in information security.
Can I find out if TRACK-COVID data held in the UK LLC Trusted Research environment has been approved for a research project?
UK LLC has a Data Use Register – https://ukllc.ac.uk/data-use-register – where you can view all approved and declined applications, with project summaries that provide a list of the UK LLC partner Longitudinal Population Studies that have been approved as part of each project and the aims of the research question.
The UK Data Protection Act 2018 provides individuals with rights over how their data are used. The UK LLC supports these rights. If you would like to find out more, read the full UK LLC privacy notice – https://ukllc.ac.uk/privacy-policy