Population Research UK Coordination Hub
Lead Research Organisation:
University of Bristol
Department Name: Faculty of Health Sciences
Abstract
Population Research UK (PRUK) is designed to support the UK's longitudinal research community. The community includes longitudinal studies and their participants, researchers, research groups and policy makers in national, local, and devolved government who use the research findings to inform policy. PRUK's role is to bring these groups together to share ideas, agree best practice and to improve the infrastructure to support the research. It will invest in training so the community is more effective, efficient and can deliver more public benefit research.
What does this mean and why is it important?
Longitudinal studies gather data about people's lives over time. This data can lead to discoveries that improve people's lives. There are 50-100 UK longitudinal studies with 2-3m participants who donate data and sometimes biological samples to their study. Other information, such as NHS and government administrative records can be added to study data to reduce bias and allow different research investigations. Between 2007-21 over 16,000 research reports were published using these data. PRUK is designed to make even more use of this data, by making it findable and accessible within secure systems designed to protect participant confidentiality. The aim is to make it easy to conduct research without compromising security. This will allow quicker answers to important research questions and reduce studies' operating costs.
How will PRUK work?
This application is to fund the PRUK 'Hub' that will lead PRUK activities and support the community. It will be the community who collectively agree best practice and methods to streamline common tasks. For example, how to design a data application form to access data from many studies. Based on these agreed approaches, PRUK will then invest in making existing systems more user-friendly and efficient. PRUK will also invest in researcher training and links to the public and policy makers.
Who is involved in PRUK?
PRUK will be an open and inclusive community of people and organisations working in longitudinal research. It will include public and participant representatives, ensuring the public are able to contribute.
Our Hub Team includes two directors - from University of Bristol and UCL - who have decades of experience leading longitudinal studies and related infrastructure. They will form a Hub Leadership Group which includes balanced representation from the UKRI LPS support infrastructure (The Longitudinal Linkage Collaboration and CLOSER) alongside dedicated Forum Chairs who will - together - bring a broad community voice to PRUK. This will enable us to learn from other initiatives and help promote the benefits of longitudinal research to a wide audience.
What will this funding allow PRUK to do?
Make it easier:
- for researchers to find the right data for their research question; access data securely and establish ways to make use of data in studies where access has been restricted.
- for the public to have clear information on who is using what data for which purpose, the benefits arising from data use and how decisions about accessing data are made.
Improve:
- the systems used to link study data to other records and to conduct research in a secure way. This will be designed to make research more inclusive, and fair, providing benefits relevant to a wider UK population, including making better use of longitudinal data to support local and devolved policy decisions.
- training for researchers to use new methods to make sense of complex data. It will train study staff on topics such as data management. It will train researchers to work with policy makers, to understand their needs and how to communicate findings to them appropriately.
- links between researchers and policy makers in the NHS and across governments.
PRUK will help to raise awareness of what data exists, how it is being used, and how it is improving people's health and wellbeing.
What does this mean and why is it important?
Longitudinal studies gather data about people's lives over time. This data can lead to discoveries that improve people's lives. There are 50-100 UK longitudinal studies with 2-3m participants who donate data and sometimes biological samples to their study. Other information, such as NHS and government administrative records can be added to study data to reduce bias and allow different research investigations. Between 2007-21 over 16,000 research reports were published using these data. PRUK is designed to make even more use of this data, by making it findable and accessible within secure systems designed to protect participant confidentiality. The aim is to make it easy to conduct research without compromising security. This will allow quicker answers to important research questions and reduce studies' operating costs.
How will PRUK work?
This application is to fund the PRUK 'Hub' that will lead PRUK activities and support the community. It will be the community who collectively agree best practice and methods to streamline common tasks. For example, how to design a data application form to access data from many studies. Based on these agreed approaches, PRUK will then invest in making existing systems more user-friendly and efficient. PRUK will also invest in researcher training and links to the public and policy makers.
Who is involved in PRUK?
PRUK will be an open and inclusive community of people and organisations working in longitudinal research. It will include public and participant representatives, ensuring the public are able to contribute.
Our Hub Team includes two directors - from University of Bristol and UCL - who have decades of experience leading longitudinal studies and related infrastructure. They will form a Hub Leadership Group which includes balanced representation from the UKRI LPS support infrastructure (The Longitudinal Linkage Collaboration and CLOSER) alongside dedicated Forum Chairs who will - together - bring a broad community voice to PRUK. This will enable us to learn from other initiatives and help promote the benefits of longitudinal research to a wide audience.
What will this funding allow PRUK to do?
Make it easier:
- for researchers to find the right data for their research question; access data securely and establish ways to make use of data in studies where access has been restricted.
- for the public to have clear information on who is using what data for which purpose, the benefits arising from data use and how decisions about accessing data are made.
Improve:
- the systems used to link study data to other records and to conduct research in a secure way. This will be designed to make research more inclusive, and fair, providing benefits relevant to a wider UK population, including making better use of longitudinal data to support local and devolved policy decisions.
- training for researchers to use new methods to make sense of complex data. It will train study staff on topics such as data management. It will train researchers to work with policy makers, to understand their needs and how to communicate findings to them appropriately.
- links between researchers and policy makers in the NHS and across governments.
PRUK will help to raise awareness of what data exists, how it is being used, and how it is improving people's health and wellbeing.
