We’re pleased to announce a new project to help maximise the visibility and long‑term value of data from Longitudinal Population Studies. The initiative will enable UK-based Longitudinal Population Studies to apply to join UK Longitudinal Linkage Collaboration (UK LLC) and/or the UK Data Service at no cost.
The project is being led by UK LLC in collaboration with the UK Data Service and is funded by Population Research UK. This funding will improve data discovery capabilities, streamline data access processes and mechanisms, and support linkage and access to linked Longitudinal Population Studies data.
Camilla Philpot Thomsen, Associate Director for Data Operations at the UK Data Service, said: “The UK Data Service is delighted to partner with UK LLC on this fantastic opportunity to expand access to and enhance the usability of a wider range of Longitudinal Population Study data. With our strong expertise in data governance and data reuse, we will support the development of appropriate pathways for data sharing for eligible Longitudinal Population Studies and provide preservation or discovery solutions where data cannot be shared.”
Why apply?
The initiative will be highly beneficial to a range of Longitudinal Population Studies. UK LLC is a national community-led research infrastructure providing record-linkage as a service to Longitudinal Population Studies and FAIR data access via their longitudinal research Trusted Research Environment.
Over 22 major Longitudinal Population Studies have already joined UK LLC, depositing data covering more than 500,000 participants, which are systematically linked to participants’ NHS, socio-economic and environmental/place-based records.
The UK Data Service is the principal repository for economic, population and social research data in the UK, and hosts data from many of the UK’s socio-economic focused Longitudinal Population Studies. We acquire, curate and preserve data across a wide range of disciplines, focusing on research, teaching and policy needs.
Archiving data with us ensures long-term preservation and access to collections, increasing the transparency and reproducibility of research. We accept high-quality, reusable data collections with clear documentation and that have ethical and legal compliance. While our primary focus is on social science data, we welcome data with broad relevance, significant coverage or unique value, provided it meets compliance and the needs of our dedicated user community.
Want to learn more?
The initiative is open to UK-based Longitudinal Population Studies which have participant volunteers that have provided data to the study, are longitudinal in nature, and hold and control the use of study data including (for UK LLC) participant identifiers.
Please note that clinical trials are not eligible for this opportunity. If you’d like to learn more about how your study can get involved, we’ll be hosting a webinar on Tuesday 14 April from 10:00–11:00 with more information on the initiative and how you can apply.
Q&A about the partnership
Provided by Ana Barros, the Communications & Engagement Manager for Population Research UK:
What is the significance of this new data linkage partnership between UK Longitudinal Linkage Collaboration (UK LLC), the UK Data Service (UKDS) and Population Research UK (PRUK)?
This work marks a key advance in the data infrastructure supporting longitudinal population studies by building on the expertise and expanding access to two key existing UKRI investments.
Through collaborative efforts to improve discovery and access, it will help build a more efficient data landscape for health and social science longitudinal population studies for the long term.
Our vision is that all LPS are supported by effective infrastructures: with UKDS providing archiving and tried and tested access routes, and UK LLC providing a Trusted Research Environment with systematic record linkages and piloting a Genomics and AI research infrastructure.
What difference will it make to users of Longitudinal Population Studies (LPS) data?
The overarching aim is to enable researchers to use multiple LPS, ultimately to allow data use across a wider range of population characteristics, age and diversity.
The PRUK consultation highlighted three areas where this could be improved: discoverability, accessibility and linkage.
Taking into consideration that there are multiple platforms that can support discovery of LPS data, this initiative will allow researchers to access more studies through one process, using either UK LLC or UKDS.
This funding also supports the step-change in record linkage in longitudinal research: where UK LLC systematically links LPS data to health, financial and placed-based data across four nations, representing an unprecedented wealth of linkages at the fingertips of researchers.
What will it enable to happen that couldn’t happen before?
More LPS data will now be supported in the UK LLC and UKDS national infrastructures. This enables easier navigation and understanding of the data landscape for users, opening-up research in population studies to more researchers.
The benefits of bringing together multiple longitudinal studies and additional linkages include:
- Greater statistical power through using multiple studies’ data simultaneously to enable insights into rare outcomes and underrepresented groups or geographies;
- Better understanding of trajectories and outcomes through enhancement of longitudinal datasets with linked records;
- Triangulation of health, wealth and environmental factors to enable understanding of the complex interplay between these.
What differences could lead to in society in the future, such as enabling greater influence on Government policy?
Bringing together the UK’s wealth of population data creates a resource capable of addressing an immense range of research questions for public benefit.
The depth of repeated survey data across the social and health sciences – including information not captured in electronic records – combined with measured health and economic outcomes, enables a deeper understanding of the biological, behavioural, social, economic, and environmental determinants of health.
It also sheds light on the complex interplay between these factors that influences health and societal wellbeing and can inform intervention and policy development.
Why is it such a good example of collaborative partnership working in the Data Services sector?
This collaboration allows bringing together the complementary services of UK LLC and UKDS, with multiple benefits.
- For longitudinal studies this provides a route for all studies to maximise the sharing, use and impact of these incredibly rich data (participants data);
- For the research community it will build on the existing resource, reducing bias and enabling research into rare outcomes and across a more diverse and representative sample;
- For funders it maximises on existing investments and widens interdisciplinary connections, enabling a level of understanding of the interplay between social and health aspects that has not been achieved previously;
- For interdisciplinary researchers, this supports greater potential to study grand challenges crossing disciplines, such as those relating to ingrained inequalities.
What does it say positively about the ESRC’s vision for the future?
This activity aligns and addresses ESRC’s vision for supporting better data discovery and data access maximising on the UK’s diverse ecosystem of data producers and better connecting these.
How excited are you about working on this partnership?
It is extremely exciting to see this activity start, after several months of collaboration and planning to co-develop this opportunity.
The partnership provides a strong foundation for working together in the future and maximising impact.