UK Longitudinal Linkage Collaboration and its future in the Data Science community

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In this blog UK Longitudinal Linkage Collaboration (UK LLC) Director, Andy Boyd from the University of Bristol, outlines the service that the UK LLC delivers as part of the UK’s research infrastructure and the impact this will have on the longitudinal research community.

What is the UK Longitudinal Linkage Collaboration (UK LLC) and how it is run?

UK LLC provides record linkage services and a centralised secure research platform for interdisciplinary UK longitudinal population studies and longitudinal researchers. UK LLC has been designed and built with its partner studies, infrastructure collaborators and public contributors. It is a unique research resource that links diverse records across the UK for inclusive longitudinal research in the public good.

We are now viewed by the UK longitudinal research community – including funders and government departments – as the national Trusted Research Environment for longitudinal research using linked records. UK Research and Innovation (UKRI), Economic and Social Research Council (ESRC) and Medical Research Council (MRC) recently awarded UK LLC two grants (MR/X021556/1 and ES/X000567/1) to consolidate and expand its transformative work.

How does UK LLC work?

With our partner studies, we integrate data from UK Longitudinal Population Studies (LPS), and systematically link participants’ health data into a centralised research resource available in a secure environment called a Trusted Research Environment (TRE).

We are in the final stages of agreement to also link participants’ employment, earnings and welfare records and data relating to environmental exposure and properties and neighbourhoods. Over time, this will provide a single infrastructure to co-locate LPS data with linked routine records no matter where the participant lives in the UK. Our underlying technical system is based on the SeRP UK technology which also supports the tried and tested SAIL Databank – providing remote access to data within a Microsoft Windows environment offering standard statistical and programming software (e.g., SPSS, STATA, R, Python).

How to access data

Data are accessed via a single application form and process covering all data types and sources, with UK LLC managing the process from start to finish. Applications tend to take 8-12 weeks from submission to data provision (plus time for your institution contracting). UK LLC is currently free to access for our initial users. While UK LLC is currently a COVID-19 only resource, our ethical approval to transition to a generic research databank – facilitating any public benefit research – has been approved, and we will be working with our partner studies to communicate this change to participants in 2024.

Get in touch with our application advisors here:

UK LLC operates on a ‘five safes’ governance framework and all applicants will need to be ONS Approved Researchers.

Why is this important?

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.

Strong collaboration is the reason UK LLC can continue to provide a service to the LPS community. The design and implementation of our TRE has involved many others who generously provided guidance and advice over the past few years. These include individuals from UCL (University College London), SeRP UK, Swansea University and University of Leicester as well as all the contributing studies whose commitment to breathing life into this new way of working has been exceptional.

What service does UK LLC provide?

Today, our community TRE holds records for almost 300,000 participants from more than 20 UK-based LPS, some of which have been collecting data for decades. Our systematically linked data and large combined sample provides the data foundation for a very wide range of public good research.

Researchers apply through a centralised, streamlined and far quicker process to access the data – while at the same time delivering elevated levels of safeguards and security, which is of particular importance to study participants and publics.

With our partner LPS, UK LLC offers a route to access exceptionally detailed individual-level self-reported participant data including demographic, socio-economic and family status, life course-determinants and outcomes, and theme specific collections such as COVID-19. This data is systematically linked with NHS health records including primary care data (COVID-19 related), cancer and mortality registers, in-patient and out-patient hospital datasets, prescriptions, emergency care, mental health services and more.

In addition to this data that our TRE currently holds, plans are well underway to link some studies with environmental data (e.g. air and noise pollution levels, green space availability, property and neighbourhood characteristics) and administrative data (e.g. education, employment, tax and benefits records).

What can researchers, study participants and publics expect?

UK LLC’s design enables researchers to conduct public good research. Examples of what it will enable for research are: life-course measurement of health exposures and administrative data (e.g. education, employment, tax and benefits records), covariates and outcomes; identifying patterns of service use to understand care pathways and health/administrative intervention take-up to inform policy evaluation and econometrics studies; the capture of data not readily amenable to direct measurement (e.g. environmental exposures) and integration of participant self-report data on behaviours and aspirations which are not captured and recorded in routine health and administrative records. Additionally, researchers will be able to look at participant follow-up independent of active LPS participation, enabling more inclusive research and the means to quantify and address attrition and attrition bias, as well as selection bias.

The intensive work that has happened over the last few years as part of the UKRI-funded COVID-19 Longitudinal Health and Wellbeing National Core Study (MC_PC_20030) to establish UK LLC has resulted in the delivery of a responsive national data platform capable of rapidly informing crisis response, able to inform public health and wider government policy in response to emergency situations.

What can we expect the impacts to be from a study participant and public perspective?

We have a thriving Public Involvement Programme which extends across all areas of our organisation. It includes people who are study participants who understand the relationship and documentation shared between LPS and their participants. And we have members of the public who can represent a diverse range of perspectives and experiences. This combination provides us with insights and accountability that helps us drive forward in a way that is acceptable and inclusive to those whose data is being used for research.

How will UK LLC work in alignment with the wider community?

UK LLC does not and cannot work in isolation. Our longitudinal study partners are at the heart of the organisation, along with key infrastructure collaborators. We connect and work in alignment with others in the data science space to further strengthen the UK’s data infrastructure. This includes UK Data Service, Administrative Data Research UK, Office for National Statistics, Health Data Research UK, CLOSER and DATAMIND. We are members of the UK Health Data Research Alliance.

As an increasing number of researchers use UK LLC’s TRE, our emphasis on reusable research will help the community to build an ever-increasing knowledge base to build and improve upon. We are at the point now where researchers working on COVID-19 research are starting to publish and deposit their syntax and other outputs into the UK LLC GitHub for reuse – it is an exciting time for us all to learn what discoveries will be unearthed that have only been made possible due to the service UK LLC provides to the LPS community.

UK LLC is not intended as an exclusive resource holding LPS data – with the studies continuing to provide access to their data via existing routes, including UK Data Service. However, UK LLC provides a unique new resource where linked data at scale can be accessed across pooled study data.

You can contact the UK LLC team via email, follow them on Twitter/X or LinkedIn or learn about what we do via some helpful YouTube videos. Further information about UK LLC and our partner studies can be found here

About the author

Andy’s 22 years with Children of the 90s study (ALSPAC (Avon Longitudinal Study of Parents and Children) at the University of Bristol has provided him an array of experience through his various roles, where he designed and led the implementation of ALSPAC’s record linkage and governance programme with Professor John Macleod. This has allowed him specialised knowledge in designing data and governance infrastructure needed for linking participants in longitudinal studies with routine records to augment cohort study databanks. Andy is now Director of UK LLC and co-leads Health Data Research UK’s ‘Trust and Transparency’ governance and public involvement programme – which seeks to facilitate an effective governance system for UK data science with meaningful public involvement and oversight.

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