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.
Organisations
| Title | CLOSER Longitudinal Population Studies Data Audit Report |
| Description | The purpose of this data audit is to provide a baseline of information to enable the ESRC and MRC to understand the current state of the many activities that the Longitudinal Population Studies (LPS) carry out, to better understand where gaps exist, where improvements may be possible and to plan for future data collection and support for UK LPS |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | This data audit directly informed ESRC, MRC, and the Population Research UK Hub to help ensure the PRUK activities enhanced the current landscape and avoid duplication of existing services to best enhance UK longitudinal population studies. |
| URL | https://www.ukri.org/wp-content/uploads/2023/05/ESRC-090523-Funding-Opp-PopulationResearchUKCoordina... |
| Title | PRUK UKDS: Introduction to Synthetic Data for Longitudinal Data Managers Workshop |
| Description | This record contains materials from the interactive workshop, Introduction to Synthetic Data for Longitudinal Data Managers, hosted by the UK Data Service (UKDS) as part of the PRUK UKDS Skills Development for Managing Longitudinal Data for Sharing Project. The workshop aimed to introduce data managers and their colleagues to the fundamentals of synthetic data, including its potential for enhancing data management and sharing in longitudinal and biomedical studies. The workshop was designed to provide practical and theoretical insights into synthetic data through interactive presentations, live coding demonstrations, and Q&A sessions. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2024 |
| Provided To Others? | Yes |
| Impact | The workshop materials introduce the concept of synthetic data and its applications in longitudinal research. To date, the training material has been viewed 1072 times and downloaded 148 times. |
| URL | https://zenodo.org/records/14238803 |
| Title | PRUK UKDS: Introductory Research Data Management Course - Enhancing Longitudinal Data Sharing |
| Description | This record contains the finalised materials for the Introductory Research Data Management Course - Enhancing Longitudinal Data Sharing, delivered by the UK Data Service (UKDS) as part of an initial Population Research UK (PRUK) project. These materials are designed to equip data managers with foundational research data management skills, specifically focusing on enhancing longitudinal data sharing. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2024 |
| Provided To Others? | Yes |
| Impact | This course provides foundational skills in research data management, focusing on best practices for longitudinal data sharing. To date the training material has been downloaded 341 times. |
| URL | https://zenodo.org/records/14238306 |
| Title | PRUK UKDS: Introductory Research Data Management Course - Enhancing Longitudinal Data Sharing - Train the Trainer Materials |
| Description | This record contains the Train-the-Trainer materials for the Introductory Research Data Management Course - Enhancing Longitudinal Data Sharing, delivered by the UK Data Service (UKDS) as part of an initial Population Research UK (PRUK) project. These materials are designed to support trainers in delivering foundational research data management training, specifically focusing on enhancing longitudinal data sharing. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2024 |
| Provided To Others? | Yes |
| Impact | Comprehensive materials designed to equip professionals with the skills to deliver training on research data management. Training material has been downloaded 254 times. |
| URL | https://zenodo.org/records/14238688 |
| Description | ALSPAC and PRUK research seminar - Leicester University. Super Seminar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of the ALSPAC study resource and value of coordinating LPS in the UK through the PRUK initiative - Leicester University. |
| Year(s) Of Engagement Activity | 2024 |
| Description | CHILD Cohort Special meeting SICKKIDS Hospital Toronto |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of the ALSPAC resource, the importance of LPS for undertaking longitudinal research and the value (to an international audience) of coordinating initiatives like PRUK. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Consultation workshop - Belfast |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop to engage with individuals using data from UK Longitudinal Population Studies to identify key needs in the LPS research landscape, to guide PRUK's activities and commissioned projects. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Consultation workshop - Bristol |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop to engage with individuals using data from UK Longitudinal Population Studies to identify key needs in the LPS research landscape, to guide PRUK's activities and commissioned projects. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Consultation workshop - Edinburgh |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop to engage with individuals using data from UK Longitudinal Population Studies to identify key needs in the LPS research landscape, to guide PRUK's activities and commissioned projects. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Consultation workshop - Leeds |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop to engage with individuals using data from UK Longitudinal Population Studies to identify key needs in the LPS research landscape, to guide PRUK's activities and commissioned projects. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Consultation workshop - London |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop to engage with individuals using data from UK Longitudinal Population Studies to identify key needs in the LPS research landscape, to guide PRUK's activities and commissioned projects. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Consultation workshop - Online |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop to engage with individuals using data from UK Longitudinal Population Studies to identify key needs in the LPS research landscape, to guide PRUK's activities and commissioned projects. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Coverage and Representativeness workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop exploring coverage and representativeness in survey data. The workshop also provided an opportunity to discuss challenges in assessing coverage and representativeness, as well as potential solutions to support researchers and commissioners. |
| Year(s) Of Engagement Activity | 2025 |
| Description | Online consultation form on website |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Online consultation form to identify key needs in the LPS research landscape to guide PRUK's activities and commissioned projects. |
| Year(s) Of Engagement Activity | 2024,2025 |
| Description | PRUK consultation report |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Online report to summarise the key messages heard from the longitudinal research community at our consultation workshops. This report was sent out on our mailing list (500+ subscribers), on our website and promoted on social media (LinkedIn, X, BlueSky) |
| Year(s) Of Engagement Activity | 2025 |
| Description | Paula Rantakallio Symposium on Birth Cohorts and Longitudinal Studies - 2024 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Overall talk "Making the most of our assets: Population Research UK as a support vehicle for longitudinal population studies". Promoting the value of LPS, using ALSPAC as an exemplar and showing the value of coordinating LPS in the UK through the PRUK enterprise. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.oulu.fi/en/events/5th-paula-rantakallio-symposium-birth-cohorts-and-longitudinal-studies |
| Description | Population Research UK introductory session and feedback gathering - Society for Longitudinal and Life Couse Studies International Conference 2024 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | First presentation of PRUK and objectives to help support the LPS community. Interactive session with SLLS participants including LPS users and curators. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.slls.org.uk/events/2024-slls-annual-international-conference |
| Description | SLLS Conference stall |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Conference stall raising awareness of Population Research UK, interacting with attendees and signing people up to our mailing list. 250 people were at the conference and 100+ signed up to the mailing list. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Social Research Association article 'Introducing PRUK' |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Article published in the quarterly magazine 'research matters' published by the Social Research Association to increase awareness of Population Research UK. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Transforming data management workshop (UKDS) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The "Transforming Data Management with the Harmony Data Tool: A Hands-on Introduction" workshop attracted 62 participants who provided overwhelmingly positive feedback (over 95% rated the event as satisfactory or highly satisfactory). Further plans have already been discussed as we are keen to support the discoverability of the tool for the data management community including a dedicated webpage on harmonisation our Research Data Management Learning Hub with information about the Harmony Data Tool designed in collaboration with the Harmony Team. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://ukdataservice.ac.uk/events/transforming-data-management-with-the-harmony-data-tool-a-hands-o... |
| Description | Video of PRUK Hub team explaining the vision of PRUK |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Video filmed at our London consultation workshop with members of the PRUK Hub team describing the vision of Population Research UK. Video was posted on PRUK YouTube channel and PRUK website. |
| Year(s) Of Engagement Activity | 2025 |
| URL | https://www.youtube.com/watch?v=jd0CCgxuSJI |
| Description | Video of workshop attendees describing what PRUK can do for them |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Video filmed at our London consultation workshop with attendees explaining why Population Research UK's work matters to them. Video was posted on PRUK YouTube channel and PRUK website. |
| Year(s) Of Engagement Activity | 2025 |
| URL | https://www.youtube.com/watch?v=7d03ZpjfHws |
| Description | Wellcome - Discovery Through Resource (Wellcome Researcher Meeting) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Wellcome Researcher meeting presenting the value of longitudinal studies (including ALPSAC) and the importance of investment into LPS infrastructure (including PRUK). |
| Year(s) Of Engagement Activity | 2024 |
