UK Longitudinal Linkage Collaboration: The National Trusted Research Environment for Longitudinal Research (Research Protocol V2.0)
Creators: name: University of Bristol
name: University of Edinburgh
Publisher: name: Zenodo
Year: 2023
Subjects: Protocol
Trusted Research Environment
Longitudinal research
Cohort study
Longitudinal Population Study
UK LLC
UK Longitudinal Linkage Collaboration

description: UK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment (TRE) for the UK’s longitudinal research community. UK LLC supports Longitudinal Population Studies (LPS) by providing record linkage and TRE services; and supports the research community by providing external researchers with secure access to a research database of integrated data. LPS are studies that follow the lives of participant volunteers over time; often over whole lifetimes and generations of families. Data collected include biological samples, genomic data and in-depth and self-reported measures of health and wellbeing. LPS therefore provide unique insights into population health, behaviours and wellbeing. The scientific opportunities of LPS are enhanced when participants’ data are collated and linked to their health and administrative data (e.g. education, employment, tax and benefits records) and environmental exposure data, and made available to researchers to access via a single application process with distributive review to data owners. This provides a valued and unique resource for UK-based researchers and policy makers.

UK LLC is led by the Universities of Bristol and Edinburgh, in collaboration with UCL, Swansea University, the University of Leicester and many of the UK’s most established LPS. The partnership also includes a strong public contribution, with members of the public and LPS participants being active in decision-making and informing the system’s design. UK LLC was established in 2020 as part of the COVID-19 Longitudinal Health and Wellbeing National Core Study (LHW NCS), because previous linkage approaches – where LPS independently arrange data sharing agreements with data owners – have been varied in success, burdensome and expensive to all parties, and were insufficiently responsive to crisis situations. UK LLC integrates data from UK LPS, linked to health, environmental and administrative data, into a centralised research resource available in a secure environment called a TRE. Co-locating many LPS' diverse samples into one location creates a highly heterogeneous UK-wide sample, increases statistical power and the number of ‘rare’ exposures/outcomes and includes sub-groups of people who tend to be harder to reach in terms of data collection. UK LLC is now viewed by the UK longitudinal research community – including funders and government departments – as the national TRE for longitudinal research using linked records.

Initially supported by HM Treasury to underpin high priority COVID-19 research questions, UK LLC is now funded by UK Research and Innovation (UKRI), Economic and Social Research Council (ESRC) and Medical Research Council (MRC) to provide a centralised service at a four-nation level (England, Northern Ireland, Scotland and Wales) for systematic linkage of LPS participants’ data to their health, environmental and administrative records and a mechanism for the secure pooled analysis of data to enable research in the public good. UK LLC is designed to scale to include most UK LPS and to provide research database services to very large numbers of research users.

UK LLC’s rigorous application process and a TRE based on the SeRP UK infrastructure at Swansea University ensure that UK LLC follows the ‘Five Safes’ set of safeguards that represent best practice in data management. UK LLC works at the highest levels of data security: UK LLC’s Information Security Management System (ISMS) is ISO 27001 certified (certificate number 21069); UK LLC is accredited by the UK Statistics Authority (UKSA) as a processing environment under the Digital Economy Act 2017 (DEA); and UK LLC completes the annual NHS Data Security and Protection Toolkit (Organisation Number: EE133799-LLC).The preliminary work to design and build the required ‘minimum viable product’ infrastructure and governance framework for urgent COVID-19 research was completed in mid-2021. The UK LLC TRE is now available to researchers as a generic purpose database, hosting diverse and complex data. As a model for efficient and low-burden linkages, the UK LLC TRE forms part of a responsive UK data science capability, which can be used by approved external researchers to conduct any public good research and which is sufficiently responsive to support investigation of emerging policy questions and to meet future crises such as new pandemics, the impacts of climate change or economic shocks.