Consolidating the UK Longitudinal Linkage Collaboration for the longitudinal research community.
Lead Research Organisation:
University of Bristol
Department Name: Social Medicine
Abstract
The UK Longitudinal Linkage Collaboration (UK LLC) is a research resource providing a 'Trusted Research Environment' (TRE) that enables safe, secure and privacy-protecting analyses of longitudinal research data. UK LLC contains data on many aspects of the lives of more than 200,000 volunteer participants in 20+ Longitudinal Population Studies (LPS). These are studies measuring volunteers' social and economic circumstances, health, development and wellbeing, and changes in these, over time. By bringing this data together with their NHS records, the UK LLC is facilitating research that meets the needs of all our communities across the UK, improving lives by better understanding determinants of health, and informing improvements to public health policy and services.
Purpose: Through the UK LLC we hope to find out more about how we can improve people's lives than was possible before this way of working was set up. We are now up and running: hosting study data provided by research volunteers linked with their NHS data and data about the environment we live in. Approved researchers within the LHW have started their analyses.
We seek funding to extend the scope of this innovative resource, making it a long-term solution that supports studies and helps researchers answer important research questions and help improve the lives of people across the UK. We want to enhance the resource by adding earnings, employment, benefit and education records. Availability of a wide variety of linked data available through a single application will enable researchers to conduct better investigations of interactions between health, society and the environment, address government research priorities and more efficiently respond to the UK's emerging economic, social and health needs.
Objectives: It is essential that we further develop the UK LLC and build on our core function as a high-quality 'research-ready' scientific resource. We will deliver our proposal through our skilled data management, operational management and governance teams with expert executive and governance structures in place. We will:
- Expand the UK LLC beyond COVID-19 research to benefit all; working with studies and the public to ensure this is done safely and transparently
- Maximise available linked data by linking employment, benefits and education records
- Develop supporting guides and documentation for approved researchers
- Create a library of the tools (eg, software code) and methods developed by UK LLC staff and researchers using the TRE, to allow future users to check and re-use them
- Widen visibility and access to data using the 'five safes' application approach with public input and in line with FAIR data principles (making data Findable, Accessible, Interoperable and Reusable).
- Support studies and the research community to work effectively together.
We also propose expansion of our public involvement model by piloting a novel 'Citizen Panel', a concept developed by Understanding Patient Data. This pilot will establish a dialogue between the data community and wider public that ensures good governance and enhances mutual learning.
These enhancements will be in addition to our core function, funded through the NCS programme.
Benefits: Research is facilitated by diverse data because our society, and health and wellbeing issues, are also diverse. Bringing this data together will help us understand more about health, social and environmental inequalities and regional differences and opportunities across the four nations.
By increasing the number of public contributors we interact with we will inform wider efforts to build confidence in this way of working with data that will prove beneficial to the public and wider research community.
Purpose: Through the UK LLC we hope to find out more about how we can improve people's lives than was possible before this way of working was set up. We are now up and running: hosting study data provided by research volunteers linked with their NHS data and data about the environment we live in. Approved researchers within the LHW have started their analyses.
We seek funding to extend the scope of this innovative resource, making it a long-term solution that supports studies and helps researchers answer important research questions and help improve the lives of people across the UK. We want to enhance the resource by adding earnings, employment, benefit and education records. Availability of a wide variety of linked data available through a single application will enable researchers to conduct better investigations of interactions between health, society and the environment, address government research priorities and more efficiently respond to the UK's emerging economic, social and health needs.
Objectives: It is essential that we further develop the UK LLC and build on our core function as a high-quality 'research-ready' scientific resource. We will deliver our proposal through our skilled data management, operational management and governance teams with expert executive and governance structures in place. We will:
- Expand the UK LLC beyond COVID-19 research to benefit all; working with studies and the public to ensure this is done safely and transparently
- Maximise available linked data by linking employment, benefits and education records
- Develop supporting guides and documentation for approved researchers
- Create a library of the tools (eg, software code) and methods developed by UK LLC staff and researchers using the TRE, to allow future users to check and re-use them
- Widen visibility and access to data using the 'five safes' application approach with public input and in line with FAIR data principles (making data Findable, Accessible, Interoperable and Reusable).
- Support studies and the research community to work effectively together.
We also propose expansion of our public involvement model by piloting a novel 'Citizen Panel', a concept developed by Understanding Patient Data. This pilot will establish a dialogue between the data community and wider public that ensures good governance and enhances mutual learning.
These enhancements will be in addition to our core function, funded through the NCS programme.
Benefits: Research is facilitated by diverse data because our society, and health and wellbeing issues, are also diverse. Bringing this data together will help us understand more about health, social and environmental inequalities and regional differences and opportunities across the four nations.
By increasing the number of public contributors we interact with we will inform wider efforts to build confidence in this way of working with data that will prove beneficial to the public and wider research community.
