Andy Boyd reflects on driving progress through collaboration
UK Longitudinal Linkage Collaboration (UK LLC) has announced new approvals from NHS providers and UK Government departments. This means linked longitudinal data held in the UK LLC Trusted Research Environment (TRE) can be used for research in the public good. Previously research was restricted to COVID-19 focused work only.
As a new era for a wide range of longitudinal health and wellbeing research begins, we caught up with Andy Boyd, Director of UK LLC and our Infrastructure chair, to learn more about these unique linkages.
Andy, this milestone reflects years of work by multiple partners across the UK. What has it taken to sustain that level of coordination and why has collaboration been so critical to getting to this point?
It’s been an extraordinary effort, involving so many people. UK LLC is a partnership of many stakeholders, including study data managers, communications staff and PIs, infrastructure experts at the Secure eResearch Platform (SeRP) team at Swansea University, and data sharing staff from government departments across the UK.
It takes a lot of coordination to work with so many partners, but I don’t think UK LLC could happen any other way – it’s a fantastic example of interdisciplinary Team Data Science. The key strength of this approach is that UK LLC has been designed with the collective insights of over 50 data managers and decades of experience across 20+ studies. With these data managers and PIs we have collectively tackled long-standing issues, such as new approaches for understanding consent in data sharing. Critically, our design means that each partner study retains control over which linkages are established and who uses what data for what purpose.
Another key group are our participant and public contributors, who have been recruited from partner studies and are now embedded in multiple roles across UK LLC, guiding our thinking, co-developing our policies and protocols, and informing our data access decision making.
This new development expands the data available for research. What kinds of new scientific possibilities do you think this opens up?
The scientific advantages of linking participants’ routine records to their study data has long been recognised, where linked records provide objectively recorded outcomes, records of service interactions.
Furthermore, they can be used to understand study representativeness and potential biases, and to inform statistical approaches to mitigate bias, particularly from loss-to-follow-up. UK LLC’s governance structure has been specifically designed to enable these benefits and for as many participants as possible to be followed up through record linkage.
It is also important to consider the benefits of opening study data to a wider user base and by enabling data from many studies to be pooled, to build both overall power and to enable sub-group analysis in vulnerable and marginalised groups.
At UK LLC we have no research agenda ourselves. We are keen to support the full breadth of interdisciplinary research. Where studies have established the appropriate permissions with their participants, we are establishing linkages across the UK’s health services, and with our linkages to HM Revenue & Customs (HMRC) and Department for Work and Pensions (DWP), data on employment, earnings, benefits and pensions will enable research at the intersection of health and socio-economic status and better understanding of ingrained inequalities in health and wellbeing.
Finally, UK LLC provides the means for studies to collectively contribute to national meta-analysis with very large studies such as UK Biobank and Our Future Health and to form a node in international research programmes, for example, those seeking to understand the impact of the climate crisis, economic shocks and the continuing impact of the pandemic.
Who will be able to apply to use this linked data, and what will the application and approval process look like?
Any professional user can apply, while we are initially restricted to non-commercial and UK based researchers only, we are working with our partners to extend this more broadly where this fits with the agreement’s studies have with their participants.
One of the transformational aspects of UK LLC is that there is a single, rapid and transparent application process. One form and a single process for our users. UK LLC manages all the complexities of our multiple stakeholders behind the scenes, and vitally, studies still control the decision-making regarding to access to their data.
Incredibly, users will be able to access data from 20+ studies, linked data from the UK’s NHS authorities and socio-economic records from the HMRC and DWP and wider data such as “omics”, environmental exposures and, over time, new forms of “Smart Data” using one form, with one simple process and a turnaround time of around 10-12 weeks from application to data access.
Through collective effort, we really have entered a new era for data access and availability.
As a PRUK Infrastructure chair, you’ve played a central role in shaping our approach to data and access. How do you see this development influencing PRUK’s work?
The data from the UK’s social science longitudinal studies have long been available from the UK Data Service (UKDS) and a broader range of studies make selected data available via specialist platforms such as Dementias Platform UK, but for many of the UK’s 200+ Longitudinal Population Studies (LPS), study data has not been as discoverable and accessible as the study PIs and community would like.
While UK LLC and UKDS are now supporting studies by providing routes to access, our ability to “discover” data, i.e., to find the combinations of data needed for a user’s research project, is still limited and many of the UK’s studies are still not accessible via a central infrastructure.
PRUK intends to address some of these challenges by enabling a wider range of studies to deposit data in central infrastructure and investing in new study and data discovery infrastructure using rapidly developing AI powered approaches. These will complement and interoperate with existing discovery tools such as CLOSER Discovery, the Catalogue of Mental Health Measures and the Health Data Research Catalogue.
Importantly, this new infrastructure will enable prospective users to find data whether it is available in central infrastructure or held in study TREs – such as UK Biobank or Our Future Health’s platforms – or within NHS TREs – such as Born in Bradford – or accessible via study teams (e.g., ALSPAC).
Together, these investments will help simplify the landscape and build towards a seamless end-to-end user experience built on a system-wide collection of studies and infrastructure.
PRUK will also invest in training – including creating synthetic data within a new secure data training environment – to help users get up to speed with using linked and other complex data.
To reflect on what this means for us, we also asked our co-Directors – Nic Timpson and Alissa Goodman – to share their perspectives. They spoke about how UK LLC’s new development aligns with PRUK’s long-term vision and the opportunities it creates for unlocking the potential of the UK’s longitudinal population data across social, economic, and biomedical research.
Nic, what does this milestone tell us about the importance of strategic leadership and cross-sector collaboration in shaping the future of UK longitudinal research?
The ambition to connect LPS with administrative data has long been shared by researchers, PIs, stakeholders, and data owners. In response to the challenges of the COVID-19 pandemic, the UK LLC team emerged as a strong and innovative force, addressing a critical need within the research community.
Their work to enable secure linkage and use of administrative data has opened new opportunities for research and collaboration – demonstrating the importance of strategic leadership in driving progress.
We are proud to have Andy Body, alongside Jennifer Symonds from CLOSER, as part of our leadership group. Their experience and insight are invaluable as we look to build on this momentum and support further development in this space.
Alissa, how do you see the LPS community making use of the data available through UK LLC, and what kinds of questions will they now be better placed to explore?
The UK’s most pressing challenges sit at the intersection of socio-economic, health and environmental issues – as we can see in the government Missions and the new NHS plan.
UK LLC will enable cross-cutting research over a broad range of scientific questions spanning biomedical and social sciences. UK LLC also breaks new ground in enabling users to use multiple cohorts together, including by pooling samples across cohorts. This will require careful consideration of representation and weighting and the work we’ll commission in PRUK will support users and methods experts to better take advantage of this new potential.
About Andy Boyd
Andy Boyd is the Director at UK LLC and Infrastructure chair at PRUK. Andy’s 22 years with Children of the 90s study (ALSPAC) has provided him an array of experience through his various roles, from Information Security Manager to Data Programmer. This has allowed him specialised knowledge in designing data and governance infrastructure needed for linking participants in LPS with routine records to augment cohort study databanks. Andy also works part-time with Health Data Research UK.
About UK LLC
UK LLC is the national TRE for data linkage in longitudinal research, led by the Universities of Bristol and Edinburgh. It simplifies access to linked data for research in the public good, enabling discoveries through linked associations between health, social, behavioural, and economic research.
