UK Longitudinal Linkage Collaboration: the transformative Trusted Research Environment for the UK longitudinal research community
Lead Research Organisation:
University of Bristol
Department Name: Faculty of Health Sciences
Abstract
The UK Longitudinal Linkage Collaboration (UK LLC) has been set up to bring together data from longitudinal study participants with their routine records. This is done in a secure way to help researchers work to improve health and wellbeing throughout and beyond the COVID-19 pandemic.
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. Linking study data with health and administrative records will help researchers deliver public benefit research. Continued funding of UK LLC will allow us to use what we learned from the pandemic and offer the resource as a long-term service for UK longitudinal research. It will make possible research into our biggest health/socio-economic challenges and widening health inequalities. The large scale, diverse linked data will provide the numbers for researchers to study rarer outcomes and harder-to-reach populations.
How does UK LLC work and how is it unique?
UK LLC will support a national move to standardise and regulate data access for all Longitudinal Population Studies (LPS). We are a national Trusted Research Environment (TRE) for longitudinal research. A TRE is a secure computer system that allows researchers to analyse data from within the environment. Our TRE holds data from 280,000 study participants from across the UK. The data itself is held within the TRE - it never leaves, and it's never sold on.
Data is linked to regularly refreshed NHS and environmental records (eg, air pollution, noise pollution). We have secured approvals to link to employment, earnings, benefits and education records from the UK Government organisations who own this data. We are working with studies to make sure participants are aware of this use of their data and can discuss any concerns with their study team. We know that some studies may choose not to permit all linkage options. This new resource has been made possible by providing an easy and consistent way for studies to join and by centralising our operations. Our processes were built from the ground up with particular focus on safeguards and security.
Who is involved in UK LLC?
Our partnership includes UK LLC, lead researchers from 24 studies and many other key individuals and organisations working with health data. We will support parts of the UKRI Population Research UK (PRUK) vision to centralise support for studies. This will unlock new scientific opportunities. We have public contributors, including study participants, who form an important part of our existing and planned activities. They focus on representing the views of publics and study participants, working to make sure the way we talk and promote the resource is transparent, clear and demonstrates the public benefit.
What will this funding allow UK LLC to do?
It will allow us to continue to offer this valuable national resource for research and to make it better. It will enable UK-wide analyses, allowing research results and effects on policies to be measured and compared. We will quickly be able to bring on new and existing study data. As researchers use the resource, it will create an ever-increasing knowledge base to build and improve on. Importantly, we will be able to learn from the coronavirus pandemic and use the TRE to support a quick response to future crises and NHS/UK Government needs.
Continued funding will deliver our three core objectives to a) make UK LLC a globally unique resource in the breadth and depth of its capability, b) provide a route for studies to move to working with their data in TREs and c) empower researchers to get the best out of the available data and continue to build and grow its capacity and improve its quality as a high value research resource for the UK.
By bringing this data together, we're providing a way for research to meet the needs of people across all our communities.
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. Linking study data with health and administrative records will help researchers deliver public benefit research. Continued funding of UK LLC will allow us to use what we learned from the pandemic and offer the resource as a long-term service for UK longitudinal research. It will make possible research into our biggest health/socio-economic challenges and widening health inequalities. The large scale, diverse linked data will provide the numbers for researchers to study rarer outcomes and harder-to-reach populations.
How does UK LLC work and how is it unique?
UK LLC will support a national move to standardise and regulate data access for all Longitudinal Population Studies (LPS). We are a national Trusted Research Environment (TRE) for longitudinal research. A TRE is a secure computer system that allows researchers to analyse data from within the environment. Our TRE holds data from 280,000 study participants from across the UK. The data itself is held within the TRE - it never leaves, and it's never sold on.
Data is linked to regularly refreshed NHS and environmental records (eg, air pollution, noise pollution). We have secured approvals to link to employment, earnings, benefits and education records from the UK Government organisations who own this data. We are working with studies to make sure participants are aware of this use of their data and can discuss any concerns with their study team. We know that some studies may choose not to permit all linkage options. This new resource has been made possible by providing an easy and consistent way for studies to join and by centralising our operations. Our processes were built from the ground up with particular focus on safeguards and security.
Who is involved in UK LLC?
Our partnership includes UK LLC, lead researchers from 24 studies and many other key individuals and organisations working with health data. We will support parts of the UKRI Population Research UK (PRUK) vision to centralise support for studies. This will unlock new scientific opportunities. We have public contributors, including study participants, who form an important part of our existing and planned activities. They focus on representing the views of publics and study participants, working to make sure the way we talk and promote the resource is transparent, clear and demonstrates the public benefit.
What will this funding allow UK LLC to do?
It will allow us to continue to offer this valuable national resource for research and to make it better. It will enable UK-wide analyses, allowing research results and effects on policies to be measured and compared. We will quickly be able to bring on new and existing study data. As researchers use the resource, it will create an ever-increasing knowledge base to build and improve on. Importantly, we will be able to learn from the coronavirus pandemic and use the TRE to support a quick response to future crises and NHS/UK Government needs.
Continued funding will deliver our three core objectives to a) make UK LLC a globally unique resource in the breadth and depth of its capability, b) provide a route for studies to move to working with their data in TREs and c) empower researchers to get the best out of the available data and continue to build and grow its capacity and improve its quality as a high value research resource for the UK.
By bringing this data together, we're providing a way for research to meet the needs of people across all our communities.
Technical Summary
The UK Longitudinal Linkage Collaboration (UK LLC) is a transformative and sustainable Trusted Research Environment (TRE) for the linkage of Longitudinal Population Study (LPS) data. Our objective is to provide a centralised secure service for the interdisciplinary longitudinal research community by linking LPS data to an unparalleled breadth of participants' routine, four UK nation, NHS, socio-economic and environmental records. We will integrate these data and provide rapid and FAIR access to researchers through a single process. During the COVID-19 pandemic we established UK LLC as a fully operational 'minimum viable product'.
The UK LLC design is based on the TRE and Five Safes framework. As such, it is intended to underpin the UKRI PRUK vision for centralised LPS services to provide efficiencies and maximise the scientific value of LPS data. Our model fully incorporates contemporary TRE thinking being led by the UKRI DARE UK programme and articulated in the Goldacre Review. UK LLC refinements are designed to support interoperability with the wider UK TRE data science system: (i) we are based on a SeRP UK secure analysis system; (ii) our software and policy enhancements are modular and transferable; (iii) our governance is based on best practice standards being adopted across UK TRE's (eg, Five Safes, ISO27001, Digital Economy Act compliance); (iv) our work package enhancements include the development of Application Programming Interfaces to establish bi-directional links to wider TRE systems for data sharing and efficient generation and use of metadata; (v) public contributors inform our design and operations.
Through this partnership we will refine and consolidate the UK LLC, adding critical new functionality to support multi-omics analysis (adding a parallel LINUX based environment tailored to the omic automating our processes to enable scaling to a wider research user base and to open enrolment to any UK LPS.
The UK LLC design is based on the TRE and Five Safes framework. As such, it is intended to underpin the UKRI PRUK vision for centralised LPS services to provide efficiencies and maximise the scientific value of LPS data. Our model fully incorporates contemporary TRE thinking being led by the UKRI DARE UK programme and articulated in the Goldacre Review. UK LLC refinements are designed to support interoperability with the wider UK TRE data science system: (i) we are based on a SeRP UK secure analysis system; (ii) our software and policy enhancements are modular and transferable; (iii) our governance is based on best practice standards being adopted across UK TRE's (eg, Five Safes, ISO27001, Digital Economy Act compliance); (iv) our work package enhancements include the development of Application Programming Interfaces to establish bi-directional links to wider TRE systems for data sharing and efficient generation and use of metadata; (v) public contributors inform our design and operations.
Through this partnership we will refine and consolidate the UK LLC, adding critical new functionality to support multi-omics analysis (adding a parallel LINUX based environment tailored to the omic automating our processes to enable scaling to a wider research user base and to open enrolment to any UK LPS.
Organisations
- University of Bristol (Lead Research Organisation)
- University of Glasgow (Collaboration)
- TEDS Research Centre (Collaboration)
- University College London (Collaboration)
- UNIVERSITY OF NOTTINGHAM (Collaboration)
- UNIVERSITY OF LEICESTER (Collaboration)
- ST GEORGE'S UNIVERSITY OF LONDON (Collaboration)
- QUEEN'S UNIVERSITY BELFAST (Collaboration)
- Bradford Institute for Health Research (BIHR) (Collaboration)
- Meteorological Office UK (Collaboration)
- UNIVERSITY OF ABERDEEN (Collaboration)
- English Longitudinal Study of Ageing (ELSA) (Collaboration)
- Understanding Society (Collaboration)
- HEALTH DATA RESEARCH UK (Collaboration)
- Norwegian Institute of Public Health (Collaboration)
- Millennium Cohort Study (MCS) (Collaboration)
- NHS Wales Informatics Service (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- Medical Research Council (MRC) (Collaboration)
- University of Bristol (Collaboration)
- UNIVERSITY OF SOUTHAMPTON (Collaboration)
- Generation Scotland (Collaboration)
Publications
Boyd A
(2023)
UK LLC Protocol V2
Brophy R
(2023)
Towards a standardised cross-sectoral data access agreement template for research: a core set of principles for data access within trusted research environments.
in International journal of population data science
Green MA
(2023)
Associations between self-reported healthcare disruption due to covid-19 and avoidable hospital admission: evidence from seven linked longitudinal studies for England.
in BMJ (Clinical research ed.)
Shaw RJ
(2023)
Associations between SARS-CoV-2 infection and subsequent economic inactivity and employment status: pooled analyses of five linked longitudinal surveys.
in medRxiv : the preprint server for health sciences
| Title | 2x Posters on UK LLC for Scotland's Health Research and Innovation Conference |
| Description | 2 posters were created for Scotland's Health Research and Innovation Conference. One was an overview of UK LLC and the other was an overview of UK LLC Public Involvement Program. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2023 |
| Impact | Many people expressed interest in finding out more information on UK LLC and were impressed with the detail on the posters. Many people stopped for further information. |
| Title | Infographic attached to lay summary for publication |
| Description | UK LLC Research and Communications Coordinator produced an infographic to be attached to a lay summary also created for the first publication to come from UK LLC. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2023 |
| Impact | Study findings could be interpreted by a lay audience. Important information can be conveyed in a way that all can understand - including study participants whose data was used. |
| URL | https://bpb-eu-w2.wpmucdn.com/blogs.bristol.ac.uk/dist/a/708/files/2023/07/m-green_llc0009_lay-summa... |
| Title | Infographic for Fair Processing |
| Description | UK LLC Communications and Engagement Officer created an infographic regarding opening up beyond COVID research for fair processing. |
| Type Of Art | Artwork |
| Year Produced | 2024 |
| Impact | This is aimed at study participants so they can have an understanding of what this means for their data being used. Study participants were able to look to this information for clarity on what opening up beyond covid research means for them, and able to ask any further questions. |
| Title | UK LLC Overview Animation/Video |
| Description | A combination of overview slides, animations and videos to play during conferences and events in the background. This gives an overview of UK LLC, including how we link data and future plans. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2024 |
| Impact | During conferences, individuals were able to engage with the screen and what was being shown while staff members were busy speaking to others. Information was gathered before they had the ipportunity to speak further to a member of the UK LLC team. |
| Title | UK LLC update: A national research resource approved for public good research video |
| Description | Video created by UK LLC Co-Director outlining details of UK LLC opening up for research beyond covid-19. They explain what is changing, how this will work and how this will make a difference. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2024 |
| Impact | The public, patients and study participants can clearly learn what changes are happening with UK LLC and be reassured that everything is done safely and securely (e.g., ethics approval, research in public good and research in Trusted Research Environment). |
| URL | https://youtu.be/dPvz2U2qwRs |
| Description | ADR England Data Linkage Steering Group |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://www.adruk.org/ |
| Description | Andy Boyd took part in a Kantar Public interview, commissioned by CLS |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or improved professional practice |
| Impact | This PPIE work has informed the design of consenting within the CLS run pilot of the new ESRC funded birth cohort study and potential UK LLC study. |
| Description | Andy Boyd work with the MRC Regulatory Support Unit |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or improved professional practice |
| Description | CLOSER Study Network |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Improved knowledge exchange across UK longitudinal studies leading to study level improvements in policy and regulatory compliance. |
| Description | Consultation Response (DHSC Data access policy) |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | Provided evidence to the DHSC Review based on UK LLC experience and for UK longitudinal studies and that the SDE governance framework should establish equivalency with Digital Economy Act/UKSA regulations and support an independent (UK LLC) TRE. |
| Description | Consultation Response (Goldacre Review) |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | Provided evidence to the Goldacre Review based on UK LLC experience and for UK longitudinal studies. |
| Description | Consultation Response (Sudlow Review) |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | Provided evidence to the Sudlow Review based on UK LLC experience and for UK longitudinal studies; particularly on need for GP data linkage. |
| Description | Consultation Response (UK Biological Security Strategy) |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | Provided evidence to the Goldacre Review based on UK LLC experience and for UK longitudinal studies. |
| Description | DWP/CRIS Project Advisory Board |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://projects.slam.nhs.uk/research/cris/cris_projectsdetails?ID=1383 |
| Description | Five Safes Taskforce |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or improved professional practice |
| Impact | NHS England adopting the UK Statistics Authority accreditation framework for TREs to provide accreditation of the new NHS Secure Data Environment network. Bringing efficiencies in TRE operations, design and management; cost efficiencies for compliance and improved possibilities for linking health records with non-health data. |
| Description | Information Security & Governance Advisory Board(s) |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Continuous mprovements to University of Bristol security and governance policy and compliance. |
| Description | Lobbying to improve NHS England Data Linkage Processes |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or improved professional practice |
| Impact | NHS England have adapted their processes to provide more transparency over linkage outcomes and data processing, enabling TREs such as UK LLC to undertake improved quality assessments and to provide users with insights on quality. |
| Description | Secured ministerial approval from Department for Work and Pensions to support linkage of LPS data in UK LLC to participants DWP records |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | This is the first agreement from DWP to share records with LPS for >15 years. This is based on >6m negotiations and the development of a mutually agreeable protocol based on the provisions of the Digital Economy Act 2017. The negotiations were supported by ADR UK, Office for National Statistics, the Health & Safety Executive and HDR UK. |
| Description | TRE Legal Toolkit Action Force |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | The standardised toolkit is now being rolled out in UK TREs and is contributing to new NHS England Secure Data Environment policy and practice. These have been published for international dissemination of best practice. |
| Description | Trust & Transparency Pan-UK Data Science Goverance Steering Group |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | (1) Diverse and regular contributions to the new NHS SDE policy framework - including successfully lobbying NHS England to adopt the UKSA TRE accreditation framework for the NHS SDE accreditation standard. This will support TREs efficiently manage compliance and enable cross-domain data sharing across TREs. (2) the development of new governance tools including standardised legal tools and TRE/SDE governance pathway mapping and discovery tools. (3) the development of TRE Transparency standards and the distribution via funding call of 19 projects to improve transparency across UK LLC TREs. |
| URL | https://ukhealthdata.org/news/pan-uk-data-governance-steering-group-makes-progress-in-improving-tran... |
| Description | UK Health Data Research Alliance Council Meeting |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Developed responses to government policy consultations. Developed new policy and governance tools which are to be rolled out across Alliance members. |
| URL | https://ukhealthdata.org/ |
| Description | A Work And Health Research Data (AWAHRD) Platform |
| Amount | £119,857 (GBP) |
| Funding ID | NIHR206271 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 07/2024 |
| Title | Geographically indicators (IMD) |
| Description | Deciles of IMD, population density, urban rural indicator mapped to encrypted LSOA. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2023 |
| Provided To Others? | No |
| Impact | These data allow metrics about geographical areas (LSOAs) which are commonly found in NHS datasets to be linked. This enables researchers valuable insight into the socio demo/environmental areas where participants reside. |
| Title | NHS Labelling Metadata |
| Description | NHS labelling metadata sourced from HDRUK API and NHS data dictionaries. These are distilled and harmonised with the UK LLC data to produce metadata in the form of variable and value labels. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2023 |
| Provided To Others? | No |
| Impact | The labelling is automatically applied to NHS datasets in the UK LLC TRE when data is pulled from the DB view 'helper' syntax. These metadata are also available to query in isolation by any researcher within the TRE. |
| Description | Collaborating UK LLC Study (ALSPAC) |
| Organisation | University of Bristol |
| Department | Avon Longitudinal Study of Parents and Children (ALSPAC) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | ALSPAC have provided data into the UK LLC and this is now being used for multiple research projects. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (Born in Bradford) |
| Organisation | Bradford Institute for Health Research (BIHR) |
| Department | Born in Bradford |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | BiB have provided data into the UK LLC and this is now being used by multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (ELSA) |
| Organisation | English Longitudinal Study of Ageing (ELSA) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demographic data collected since inception. Covid questionaire data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidance documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | ELSA have provided data into the UK LLC and this is now being used by multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (Generation Scotland) |
| Organisation | Generation Scotland |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | Generation Scotland have provided data into the UK LLC and this is now being used by multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (MCS) |
| Organisation | Millennium Cohort Study (MCS) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demographic data collected since inception. Covid questionaire data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidance documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | MCS have deposited data into the UK LLC - this is now being used in multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (MRC NHSD 1946) |
| Organisation | Medical Research Council (MRC) |
| Department | National Survey of Health and Development (NSHD) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | NHSD have deposited data into the UK LLC - this is now being used in multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (NCDS 1958 Cohort) |
| Organisation | University College London |
| Department | 1958 Birth Cohort/National Child Development Study |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records. Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demographic data collected since inception. Covid questionaire data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidance documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | NCDS have deposited data into the UK LLC - this is now being used in multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (NICOLA) |
| Organisation | Queen's University Belfast |
| Department | Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | NICOLA have now provided data into the UK LLC and this is available for research into COVID-19 |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (TEDS) |
| Organisation | TEDS Research Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | TEDS are committed to providing data into the UK LLC once their fair processing campaign is concluded. This will then produce a research-ready resource. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (UKHLS, Understanding Society) |
| Organisation | Understanding Society |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demographic data collected since inception. Covid questionaire data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidance documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | UKHLS have deposited data into the UK LLC - this is now being used in multiple research investigations. |
| Start Year | 2020 |
| Description | Collaboration with HDRUK BHF Data Science Centre 'Enhancing Cohorts' theme |
| Organisation | Health Data Research UK |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Provision of record linkage and governance guidance to the HDRUK BHF Data Science Centre 'Enhancing Cohorts' theme. |
| Collaborator Contribution | Consideration of different governance models to support LPS activity in TRE ways of working. |
| Impact | N/A - still progressing. |
| Start Year | 2022 |
| Description | Collaboration with UCL Institute of Child Health (eCHILD TRE, NATSAL Cohort, Record Linkage QA programme) |
| Organisation | University College London |
| Department | Institute of Child Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UK LLC are collaborating with UCL ICH for TRE knowledge exchange and input into LPS record linkage activity. This includes: * Providing materials and governance advice and materials to the UCL eCHILD TRE (https://www.adruk.org/our-work/browse-all-projects/echild-linking-childrens-health-and-education-data-for-england-142/) - for example, content for NHS Digital applications, Data Access Committee methodology and documents such as Terms of Reference, Review Criteria and Standard Operating Procedures * Providing record linkage & governance advice to the National Survey of Sexual Attitudes and Lifestyles (NATSA, https://www.natsal.ac.uk/) particularly on recruitment using linked NHS records as a inclusive sampling frame and linkage governance strategy. * Partnership on record linkage Quality Assurance and algorithm development with Dr Katie Harron (to include QA of UK LLC linkage). |
| Collaborator Contribution | All activities are led by UCL. Dr Katie Harron will supervise a linkage quality assessment of UK LLC linkage outputs with a PhD student (supported by a Wellcome Trust grant where Dr Harron is PI and AB, UK LLC Director is Co-A). |
| Impact | * Knowledge Exchange and contribution of UK LLC learning, practice and materials to UCL eCHILD. * Contribution of Record Linkage & Governance expertise to NATSAL project planning & governance development. * Development of a project protocol for the evaluation of UK LLC linkage by UCL ICH collaborators. * Submitted academic paper on the use of synthetic data to evaluate record linkage algorithms. |
| Start Year | 2018 |
| Description | Digital Health and Care Wales |
| Organisation | NHS Wales Informatics Service |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Descriptive documentation to inform file handling and processing. Managing of timelines to deliver against milestones. Contracting and governance framework. Contracted Swansea University to develop new data processing capability for NHS DHCW. |
| Collaborator Contribution | Data processor. Unique systems and expertise for the processing and de-identification of data and sending to NHS Digital and the University of Leicester for linkage. Provision of unique linkage key for the linkage of welsh health data. |
| Impact | New data pipelines enabling DHCW to act as 'linkage broker' for UK LLC and contributing LPS. These have been used to (1) link studies to NHS Digital health records and (2) geocode participant address data and link this to environmental exposure models. This functionality is being extended to NHS Scotland and Wales records and an application is in place to use this to link to administrative records held by HM Revenue & Customs, Department for Work and Pensions and Department for Education via Office for National Statistics. The data arising from this are being used in multiple research projects for the National Core Studies programme. |
| Start Year | 2020 |
| Description | Environmental Exposure Modelling Partnership |
| Organisation | St George's University of London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Will collaborate with SGUL Population Health department to conduct environmental exposure modelling and expert environmental exposure sciences contribution to UK LLC and UK LLC Executive and Management. |
| Collaborator Contribution | Exposure data on air quality, environmental noise, greenspace to be linked to the cohorts. Co-development of novel pipeline for linkage. |
| Impact | Modelling of physical exposure estimates (see UK LLC data outputs ResearchFish entries). |
| Start Year | 2023 |
| Description | Environmental Exposure Modelling Partnership |
| Organisation | University of Leicester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Jointly designed (with Swansea University) a novel research protocol for the secure and privacy preserving geocoding of participant address data and the formation of a Residential Household 'Spine' within the UK LLC. UoLeicester have established protocols for the systematic modelling of physical environment exposures across the UK. UK LLC with contributing LPS are providing privacy-preserving access to address data from a number of studies, access to future studies address data for linkage as it becomes available. This is in conjunction with UK SeRP. |
| Collaborator Contribution | Exposure data on air quality, environmental noise, greenspace to be linked to the cohorts. Co-development of novel pipeline for linkage. |
| Impact | Modelling of physical exposure estimates (see UK LLC data outputs ResearchFish entries). |
| Start Year | 2020 |
| Description | Exploring Multimorbidity in Early-life through Genetic Epidemiology (EMERGENT) |
| Organisation | Norwegian Institute of Public Health |
| Country | Norway |
| Sector | Public |
| PI Contribution | Andy Boyd is a named collaborator on this award led by PI Laurie Hannigan. Andy's role is to provide expert insight into data linkage availability, access mechanisms and the use and interpretation of linked Electronic Health Records in the UK to the PI and programme. Programme analysts to use UK LLC as a resource. |
| Collaborator Contribution | To date I have contributed to the development of the project proposal which has now successfully been awarded and set-up prioritisation meetings (advising on UK LLC availability). |
| Impact | This project has only recently started. |
| Start Year | 2022 |
| Description | Pan-UK Data Governance Steering Group (HDRUK) |
| Organisation | Health Data Research UK |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | AB (UK LLC Director) is jointly leading the newly convened Pan-UK Data Governance Steering Group with HDRUK Head of Legal. This group is designed to bring together very senior research governance stakeholders from across UK Government (NHS, Office for National Statistics, Department for Culture, Media and Sport, Cabinet Office), across four nations, and with input from senior academic data infrastructure leads (national TREs, HDRUK, ADRUK, UK LLC). The group is tasked with identifying and resolving governance barriers to effective data sharing and use and to steer the development of a TRE ecosystem for UK Data Science. |
| Collaborator Contribution | HDRUK are providing co-leadership of this group and resources to tackle identified issues. HDRUK are providing secretariat for the groups activities. |
| Impact | * Developed standardised contractual tools to support efficient cross-TRE/SDE ways of working (Brophy, Rachel, et al. "Towards a standardised cross-sectoral data access agreement template for research: a core set of principles for data access within trusted research environments." International Journal of Population Data Science 8.1 (2023).) * Developed best practice standards for transparency in TREs and issued a funding call with 19 successful applicants (https://ukhealthdata.org/news/new-funding-awarded-to-improve-transparency-of-health-data-access-processes-for-researchers-and-the-public/) * providing detailed guidance and support to the development of a governance framework for the NHS SDE network * provided detailed consultation responses to Information Commissioner's Office, multiple NHS policies * Facilitated the adoption of the UK Statistics Authority accreditation system by NHS England in order to ensure TRE/SDE efficiencies |
| Start Year | 2022 |
| Description | Research Data Use LLC_0015: Socio-demographic determinants of COVID-19 (Olivia Hamilton) |
| Organisation | University of Glasgow |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UK LLC provided support, advice and guidance in applying to access data, managed the application process; coordinating across NHS delegated authority, liaising with LPS and the UK LLC Public Review Panel, managing the legal contracts and other legal and ethical requirements. Provisioning the requested data within the TRE, making available to the researcher. UK LLC maintained ongoing user support for the duration of the project. |
| Collaborator Contribution | The researcher made use of UK LLC as a research resource, raising UK LLC's profile within the research community and contributing their outputs to the GitHub library which enables continuous improvement of ways of working in the TRE. UK LLC will be named in any publications forthcoming. |
| Impact | The researcher made use of UK LLC as a research resource, raising UK LLC's profile within the research community and contributing their outputs to the GitHub library which enables continuous improvement of ways of working in the TRE. UK LLC will be named in any publications forthcoming. |
| Start Year | 2022 |
| Description | Research Data Use LLC_0025: Using metabolomics to better understand COVID-19 symptoms (Francisco Perez-Reche) |
| Organisation | University of Aberdeen |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UK LLC provided support, advice and guidance in applying to access data, managed the application process; coordinating across NHS delegated authority, liaising with LPS and the UK LLC Public Review Panel, managing the legal contracts and other legal and ethical requirements. Provisioning the requested data within the TRE, making available to the researcher. UK LLC maintained ongoing user support for the duration of the project. |
| Collaborator Contribution | The researcher made use of UK LLC as a research resource, raising UK LLC's profile within the research community and contributing their outputs to the GitHub library which enables continuous improvement of ways of working in the TRE. UK LLC will be named in any publications forthcoming. |
| Impact | The researcher made use of UK LLC as a research resource, raising UK LLC's profile within the research community and contributing their outputs to the GitHub library which enables continuous improvement of ways of working in the TRE. UK LLC will be named in any publications forthcoming. |
| Start Year | 2022 |
| Description | Research Data Use LLC_0027: Mental health and COVID-19 vaccine outcomes (Ru Jia) |
| Organisation | University of Nottingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UK LLC provided support, advice and guidance in applying to access data, managed the application process; coordinating across NHS delegated authority, liaising with LPS and the UK LLC Public Review Panel, managing the legal contracts and other legal and ethical requirements. Provisioning the requested data within the TRE, making available to the researcher. UK LLC maintained ongoing user support for the duration of the project. |
| Collaborator Contribution | The researcher made use of UK LLC as a research resource, raising UK LLC's profile within the research community and contributing their outputs to the GitHub library which enables continuous improvement of ways of working in the TRE. UK LLC will be named in any publications forthcoming. |
| Impact | The researcher made use of UK LLC as a research resource, raising UK LLC's profile within the research community and contributing their outputs to the GitHub library which enables continuous improvement of ways of working in the TRE. UK LLC will be named in any publications forthcoming. |
| Start Year | 2023 |
| Description | Research Data Use LLC_0028: Identifying clusters of COVID-19 and Long Covid symptoms (Charlotte James) |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UK LLC provided support, advice and guidance in applying to access data, managed the application process; coordinating across NHS delegated authority, liaising with LPS and the UK LLC Public Review Panel, managing the legal contracts and other legal and ethical requirements. Provisioning the requested data within the TRE, making available to the researcher. UK LLC maintained ongoing user support for the duration of the project. |
| Collaborator Contribution | The researcher made use of UK LLC as a research resource, raising UK LLC's profile within the research community and contributing their outputs to the GitHub library which enables continuous improvement of ways of working in the TRE. UK LLC will be named in any publications forthcoming. |
| Impact | The researcher made use of UK LLC as a research resource, raising UK LLC's profile within the research community and contributing their outputs to the GitHub library which enables continuous improvement of ways of working in the TRE. UK LLC will be named in any publications forthcoming. |
| Start Year | 2023 |
| Description | Research Data Use LLC_0029: Harmonising diagnoses of health conditions across British birth cohorts (Laura Gimeno) |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UK LLC provided support, advice and guidance in applying to access data, managed the application process; coordinating across NHS delegated authority, liaising with LPS and the UK LLC Public Review Panel, managing the legal contracts and other legal and ethical requirements. Provisioning the requested data within the TRE, making available to the researcher. UK LLC maintained ongoing user support for the duration of the project. |
| Collaborator Contribution | The researcher made use of UK LLC as a research resource, raising UK LLC's profile within the research community and contributing their outputs to the GitHub library which enables continuous improvement of ways of working in the TRE. UK LLC will be named in any publications forthcoming. |
| Impact | The researcher made use of UK LLC as a research resource, raising UK LLC's profile within the research community and contributing their outputs to the GitHub library which enables continuous improvement of ways of working in the TRE. UK LLC will be named in any publications forthcoming. |
| Start Year | 2023 |
| Description | Secure eResearch Platform |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Co-development of pipeline for the linkage of data and it's provision within the Secure Research Platform. Development of guidance documentation. Liaison with Network of Longitudinal Studies. Management of the processes and relationships with partners to deliver. |
| Collaborator Contribution | Development and delivery of a bespoke Secure eResearch Platform. Technical support for database setup and data management. Analytical support for data curation. Governance support through meetings and advice and the sharing of example materials. |
| Impact | Swansea University (SeRP) are working with UK LLC to implement new data pipelines enabling the flows and linkage of data between the UK LLC and contributing LPS. These have been used to (1) link studies to NHS Digital health records and (2) geocode participant address data and link this to environmental exposure models. This functionality is being extended to NHS Scotland and Wales records and an application is in place to use this to link to administrative records held by HM Revenue & Customs, Department for Work and Pensions and Department for Education via Office for National Statistics. The data arising from this are being used in multiple research projects for the National Core Studies programme. |
| Start Year | 2020 |
| Description | UKRI Clean Air Programme (Data Science Integration SG) |
| Organisation | Meteorological Office UK |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | AB (UK LLC Director) is a member of the Clean Air Programme's Data Science Integration Steering Committee. This seeks to develop integrate health and environmental data resources. UK LLC providing data resources and governance exemplars. |
| Collaborator Contribution | Developing strategic plans for the integration of health and environmental exposure data across UK data resources, including networking and policy connections. |
| Impact | Members contribution to UK LLC Partnership bid; collaboration with Met Office leading to data sharing negotiations to enhance UK LLC resource and to seek further funding to support partnership applied science ambitions. |
| Start Year | 2021 |
| Description | UKRI Clean Air Programme (Data Science Integration SG) |
| Organisation | University of Southampton |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | AB (UK LLC Director) is a member of the Clean Air Programme's Data Science Integration Steering Committee. This seeks to develop integrate health and environmental data resources. UK LLC providing data resources and governance exemplars. |
| Collaborator Contribution | Developing strategic plans for the integration of health and environmental exposure data across UK data resources, including networking and policy connections. |
| Impact | Members contribution to UK LLC Partnership bid; collaboration with Met Office leading to data sharing negotiations to enhance UK LLC resource and to seek further funding to support partnership applied science ambitions. |
| Start Year | 2021 |
| Title | Quarterly metrics |
| Description | A program that collects metrics relating to data in the TRE such as its linakge rate and time to acquiral. The metrics are generated part in the TRE and part out, and combined into a quarterly report. |
| Type Of Technology | Software |
| Year Produced | 2023 |
| Impact | Tracks the efficiency of UK LLC data handling processes and helps avoid discrimination against any particular source or user group. |
| Title | SeRP user account management automation |
| Description | A collection of macros and programs designed to automate the process of managing SeRP accounts as much as possible to reduce the operator time required. |
| Type Of Technology | Software |
| Year Produced | 2024 |
| Impact | Assists UK LLC operators by drasticly reducing the time required to manage SeRP accounts. |
| Title | Terms and Conditions Synthesiser |
| Description | A programs for automatically collecting and presenting all relevant terms and conditions related to the use of the UK LLC TRE and the data within. A PDF is generated for each audience which include all applicable terms and conditions and the events for which they are relevant. |
| Type Of Technology | Software |
| Year Produced | 2023 |
| Impact | Assists the Applications team in providing appropriate terms and conditions to users and associates. |
| Title | UK LLC Explore app |
| Description | The Explore App is a publically available data discoverability and selection web application. Users can quickly research data sources and datasets as they are organised in the TRE, search through the UK LLC database with a variety of search options, and visualise metadata through a collection of graphics and figures. Users can also select datasets and create a data request form from the app. |
| Type Of Technology | Software |
| Year Produced | 2024 |
| Impact | For general discoverability of data within the UK LLC database and to assist the creation of data request for potential users. |
| Title | UK LLC NHS quarterly data loading pipeline |
| Description | This process runs following receipt of quarterly NHS extracts. It unions/appends, deduplicates and runs qc checks to ensure the data as been received and loaded as per specifications. |
| Type Of Technology | Software |
| Year Produced | 2023 |
| Impact | This new data pipeline is more robust and auditable than previous loading procedures as it loads in a dedicated staging area before pushing cleaned and qc'd outputs to the production tables. |
| Title | UK LLC Returned Data Process |
| Description | This process is run when a researcher identifies a dataset which has can be reused by another researcher. These are typically dervied data. Data go through a pipeline and disclosure risk assessment before being re-integrated into the database and becoming available to select by other researchers. |
| Type Of Technology | Software |
| Year Produced | 2023 |
| Impact | Ability to make available reuseable research data outputs produced inside the TRE. This process has already been used to make available data from one project to another. |
| Title | UK LLC data documenation Jupyter Book |
| Description | The Jupyter Book is a collection of Jupyter notebooks and markdown that document datasets held by the UK LLC as well as processes e.g. linkage. The book will be expanded to include all researcher facing material in time and it designed to be built collaboratively where researchers can contribute content. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2024 |
| Open Source License? | Yes |
| Impact | 'New' datasets e.g. air pollution have been added to the Jupyter book and used by researchers to drive requests into the UK LLC application process. |
| URL | https://ukllc-book.netlify.app/docs/intro.html |
| Title | Wellcome Trust Covid Questionnaire lookup table and notebook |
| Description | A machine learning solution that maps Wellcome Trust standardised COVID questionnaire question to LPS variables available in the UK LLC database. The lookup exists as a table in the UK LLC database and there is a Jupyter notebook available to researchers for assisting in its use. |
| Type Of Technology | Software |
| Year Produced | 2024 |
| Impact | A tool for researchers to find related variables in the UK LLC database, using the Wellcome Trust standardised COVID questionnaire as a spine. |
| Description | ALSPAC Core Funding Strategy Development Workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd attended the ALSPAC London Workshop held to provide scientific input into the future shape of ALSPAC's core funding objectives and priorities. Andy gave insights into data linkage availability and routes to data access and emerging risks and opportunities. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Andy Boyd - Cotribribution to NATSAL Expert Advisory Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Andy Boyd is a member of the NATSAL Expert Advisory Group (The National Survey of Sexual Attitudes and Lifestyles Group) providing expert insights to the Pis on linkage, governance, risks and opportuntities. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Andy Boyd - Cotribribution to NIHR CONVALESCENCE SAB |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd contrbuted to the CONVALESCENCE Strategic Advisory Board meeting as a regular contributing member of the board. |
| Year(s) Of Engagement Activity | 2021,2022,2023,2024 |
| Description | Andy Boyd - Cotribribution to University of Bristol's Ethics of Research Committee |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd is a member of University of Bristol's Ethics of Research Committee (UERC) where he provides oversight and expert opinion on research ethics matters to the University of Bristol. This is a strategic Committee forming part of UoB's governance structure and regulatory compliance mechanisms. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Attended Scotland's Health and Research Innovation Conference with 2x UK LLC Posters |
| 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 | 2 posters were created for Scotland's Health Research and Innovation Conference. One was an overview of UK LLC and the other was an overview of UK LLC Public Involvement Program. The posters sparked discussions on how UK LLC set up their Public Involvement Program and what that entails. People also showed interest in accessing data in UK LLC TRE. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Attending 'Using Scottish GP data for research' |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | UK LLC Co-Director attending the 'using Scottish GP data for research' meeting. Discussions were made on how to apply to link to GP data and what the data would look like. |
| Year(s) Of Engagement Activity | 2023 |
| Description | CLOSER Data Linkage Working Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Andy Boyd is Chair of the CLOSER Data Linkage Working Group - which meets quarterly to discuss data linkage challenges across LPS and to share insights and best practice. |
| Year(s) Of Engagement Activity | 2023,2024 |
| Description | Children of the 2020s technical advisory group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Andy Boyd is a member of the Children of the 2020s technical advisory group meeting, at which he provides expert guidance to Department for Education re the Children of the 2020s longitudinal study. |
| Year(s) Of Engagement Activity | 2020,2021,2022,2023,2024 |
| Description | DARE UK - Persona Development Workshop |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The DARE UK delivery team recently hosted a Persona and User Journey Development workshop, bringing together stakeholders from various organisations to establish key personas for a future pan-UKRI council digital research infrastructure for sensitive data research. UK LLC Co-Director attended to share thoughts and experience around UK LLC user journey in the TRE. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Data and Connectivity National Core Study Lessons Learnt Conference |
| 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 | Andy Boyd contributed to a workshop to identify the successes and barriers to data science in the pandemic and leassons learnt from the Data & Connectivity programme. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Developing mechanisms for the secure and acceptable sharing of UPRN |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd contributed to regular meetings with Office for National Statistics and Met Office regarding the secure sharing of Unique Property Reference Number (UPRN) as a mechanism to link environmental exposure and other place based data to health and socio-economic records (including for UK LLC). |
| Year(s) Of Engagement Activity | 2024 |
| Description | FASD Database workshop |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd presented at a workshop on "Addressing the fetal alcohol spectrum disorder (FASD) 'data gap': ascertaining the feasibility of establishing the first UK National linked database for FASD'. He provided insights into data availability, governance frameworks, legal basis and the use of research infrastructure. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Forming UK LLC and ONS and ADR UK data linkage collaboration |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd and Emma Turner met with ONS and ADR representatives from July 2023 until March 2024 (and ongoing) as part of ongoing discussions around policy and specific technical challenges of linking UK LLC study data with data held by ONS for a pioneering data exchange between ONS and a seperate TRE. |
| Year(s) Of Engagement Activity | 2023,2024 |
| Description | Future Data Services - Data Discovery Roundtable (London) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd attended a roundtable discussion on discoverable data set up by UKRI ESRC and Chaired by Richard Welpton (ESRC). Topics discussed included but were not limited to; interoperability, metadata, documentation, standards, multiple DOIs, linking data, skills/training (curation & discovery), data curation, influencing decision making, 'one-stop-shops', who makes the decisions, and where we want data discoverability to be in 10 years and how to get there. |
| Year(s) Of Engagement Activity | 2023 |
| Description | GESIS Meeting with the Experts Workshop |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Research manager attended this workshop on managing the risks of the different access routes for sensitive data. Ideas were gathered as to how UK LLC will implement access routes for sensitive data. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Conference: The Grand Challenges in Health Data |
| 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 | UK LLC team members attending this HDR UK Conference in Leeds. UK LLC had a stand where delegates could come and speak to the team and share ideas for future collaborations and research projects. Over 40 people signed up to the UK LLC newletter. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDRUK Improving Transparency of Processes for Accessing Health Data for Research |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Transparency Standards presented at the UK Health Data Research Alliance Council meeting in July 2023 have now been published on the Alliance website here. The standards, which were co-developed by the Pan-UK Data Governance Steering Group and HDR UK's Public Advisory Board (PAB), aim to improve the transparency of processes for accessing health data for research. HDR UK were convening a series of workshops to support the implementation of the standards by UK Health Data Research Alliance members and discuss potential funding available to support with website updates. Following this workshgop, UK LLC were granted the Transparency award grant to enhance the website. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.org/news/health-data-research-uk-responds-to-draft-transparency-in-health-and-soci... |
| Description | MRC Chief Science Officer Visit - UoB Strategic Liason |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Andy Boyd attended a University of Bristol PVC for research and MRC Strateggic session to discuss alignment of strategic priorities. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Meeting to discuss UK LLC ethics |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Research Manager met with Data Loch in the University of Edinburgh to discuss ethics and how UK LLC embed ethics decisions going forward. Both UK LLC and DataLoch shared ideas which sparked the creation of UK LLC's ethics decision making tree. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Meeting with Beatson Centre, Glasgow |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Communications and Engagement Officer met with individuals from the Beatson Centre in Glasgow to discuss and give advice on Patient and Participation Involvement and Engagement. ideas were shared on how to set up groups and better involve the public and study participants in research. Interest was shown on how UK LLC do this. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Meeting with DataLoch |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Research Manager met with DataLoch (University of Edinburgh based) to discuss and collaborate access processes and learn from each other. As UK LLC are automating their access process, it was beneficial to learn how others who work so similarly work so not to re-invent the wheel. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Meeting with HDR UK Gateway |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Research Manger and Senior Data Manager met with HDR UK gateway about improving collections on 21st December. Plans were made for future collections for UK LLC on the gateway. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Meeting with HDR UK Immunity and Inflammation Program |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Co-Director met with the HDR UK Inflammation and Immunity program. The premise of this was: The process of locating, accessing, curating, and linking data from Electronic Health Records is complex and time-consuming. Inflammation and Immunity, a new, UK-wide research driver programme, aims to streamline these procedures by developing gold-standard, clinically validated, research-ready datasets across the 4 UK nations. Funded by Health Data Research UK, our mission is to lay these 'data foundations' to help driver health care innovation using data from across the whole UK population, and transform our understanding of inflammation-mediated conditions. UK LLC co-director attended to consider how or if UK LLC could be involved. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Meeting with NiHR BioResource |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Research Manager met with NiHR BioResrouce to discuss UK LLC's access process. BioRescource made plans to work in a similar way as UK LLC. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Meeting with Smart Data Foundry |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Co-Director met with Smart Data Foundry to discuss and learn how to implement smart data into UK LLC and the sensitivities and permissions around this. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Meeting with UK Biobank |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Co-Director met with U KBiobank to discuss Scottish Data Linkage. Information was taken away on how best to apply for Scottish data, what kind of data to apply for. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Our Future Health & UK LLC Cross Working Meetings |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Aziz Sheikh arranged working meetings to support alignment of Our Future Health (OFH) with the UK Longitudinal Linkage Collaboration (UK LLC) in regard to sharing best practice and joint lobbying for change and improved access to data (particularly English GP data). |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation to Molecular Epidemiology Group |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC staff member presented at the Edinburgh Molecular Epidemiology Group meeting on UK LLC application process. This sparked interest on; a) how UK LLC have designed the application process and, b) what data is available for future research |
| Year(s) Of Engagement Activity | 2023 |
| Description | Research Data Scotland: Researcher Access Service Workshop with HDR UK Scotland |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Co-Director attended the Research Data Scotland Researcher Access Service (RAS) workshop with HDR UK Scotland. Insights were gained as to how others plan to improve their access systems for improved researcher experience. The aim of the Researcher Access Service is to make it faster and simpler to access data to support research in the public good. The service needs to operate securely, lawfully and offer an improved end-to-end experience for front- and back-end users while reducing errors and duplication. |
| Year(s) Of Engagement Activity | 2024 |
| Description | UK LLC & CLOSER LPS Minimimum Metadata Standards Working Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | UK LLC & CLOSER Conveened a working group including UK Data Archive to discuss the potential and shape of a LPS metadata minimum metadata standard to reduce study burden and improve opportunities for sharing of metadata accross platforms. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Advice to other studies - CHILL Study |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd met with Chris Griffiths of Queen Mary University London to discuss DSAs & Data as they relate to the CHILL study and UK LLC. |
| Year(s) Of Engagement Activity | 2024 |
| Description | UK LLC - Advice to other studies - SEND ERC bid |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | Andy Boyd met with Cathryn Knight (School of Education, University of Bristol) to provide expert guidance into the design of a Special Educational Needs and Disability (SEND) data science proposal. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Birmingham Intergenerational Cohort - onboarding discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd met with Rebecca Howell-Jones and Joht Chandan (University of Birmingham) and Rob Davies (University College London) to discuss potential collaboration between the Birmingham Intergenerational Cohort study and UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Cotribribution to ESRC data policy refresh |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Andy Boyd contributed to University of Dundee led review of factors relating to Data Policy in order to inform ESRC's future data policy changes. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Cotribribution to GP linkage to cohorts Workshop |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd attended a meeting set up by Ben Goldacre (University of Oxford, OPenSAFLEY) at which various LPS PIs were also present to discuss cohorts' access to linked primary care data via UK LLC. The group discussed the pros and cons of various models of accessing GP data and identified opportunties for OpenSAFELY to provide a mechansim of population LPS data with GP linkages. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Cotribribution to HDR UK International Data Access Action Force |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd attended the InternaAndy Boyd (UK LLC Director) and Katharine Evans (UK LLC Policy Manager) attended an HDR UK Data Access Action Force meeting to develoop standardised mechanisms for data access in UK TREs. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Cotribribution to NHS England SDE Data Access 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 | Andy Boyd (UK LLC Director) and Katharine Evans (UK LLC Senior Data Manager - Governance and Users) attended an NHS England SDE Network workshop session on Data Access to the new NHS England SDE network. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Cotribribution to a special working group for Enabling Access to GP Data |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Andy Boyd contributed to a workshop to discuss strategy and way forward to Enable Access to GP Data set up by the Secretary of State for Health. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - EPIC-Oxford - onboarding discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd, Robin Flaig and Jacqui Oakley met with Luiza Scurtu, Ruth Travis, Tim Key, Mahboubeh Parsaeian, Tammy Tong, Keren Papier and Izabella Orzechowska of Oxford University to discuss UK LLC cohort elligibility and the EPIC-Oxford onboarding. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Glasgow Students LPS - onboarding discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd met with David Carslake to discuss onboarding the Glasgow student cohort into UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - HAGIS LPS - onboarding discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd, Robin Flaig and Jacqui Oakley met with Elaine Douglas and David Bell from Stirling University regarding a possible collaboration for the HAGIS LPS to onboard to UK LLC |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Health Research from Home & CSS Biobank LPS - Onboarding Discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd met with William Dixon and Elaine Mackey of Manchester University, and Claire Steves, Victoria Vazquez and Vicky Bowyer of King's College London to discuss Health Research from Home & the CSS Biobank and onboarding the LPS into UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Inclusion of Bristol Legacy Cohorts - onboarding discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd met with the PIs of five legacy cohorts managed by University of Bristol to discuss the possibility of hosting various Bristol-based cohorts with UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Inclusion of KCMHR Cohorts - onboarding discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | Andy Boyd and Robin Flaig met with Nicola Fear of KCL to discuss inclusion of KCMHR LPS into UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Inclusion of MIREDA cohort - onboarding discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd met with Sinead Brophy of Swansea University to discuss potential collaboration between the MIREDA (Mother & Infant Research Electronic Data Analysis) study to UK LLC |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - Million Women Study - onboarding discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd, Robin Flaig and Jacqui Oakley met with Gill Reeves, Sarah Floud and Sarah Atkinson of Oxford University in May and November 2023 to discuss the possibility of a collaboration between UK LLC and the Million Women longitudinal population study... |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - UK REACH LPS - Onboarding Discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd, Robin Flaig and Jacqui Oakley met with Manish Pareek and Holly Reilly from the University of Leicester and Katherine Woolf from UCL to discuss the onboarding of UK-REACH LPS to UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - VIKING genes study - onboarding discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd and Robin Flaig met with Jim Wilson (VIKINGs PI) and Shona Kerr (VIKINGs Project Manager) to discuss potential for onboarding of VIKING Genes LPS to UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - eRISK twins cohort study - onborading discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd met with Jayati Das-Munshi and Helen Fisher of King's College London to discuss potential collaboration between the ERISK Twins Cohort study onboarding to UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC - presentation at the JISC NHS-HE IG Working Group |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd presented in person to a TRE working group (JISC NHS-HE IG) on Trusted Research Environments (TREs) and the work of UK LLC in developing the national TRE for longitudinal studies. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC / CLOSER Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC and CLOSER met to discuss future collaborations between the two. Plans were made to involve communications contacts from both to help plan future activities. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC Data Access Public Review Panel 19 January 2024 |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | UK LLC Data Access Public Review Panel met with the applicant of research project llc_0030. The applicant presented on their project for 5 minutes and the panel were given to opportunity to ask questions on the public involvement strategy, the lay summary and the public benefit. The applicant was given ideas on how to better involve the public in the dissemination of results. |
| Year(s) Of Engagement Activity | 2024 |
| Description | UK LLC Full Team Away Day |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Bristol and Edinburgh teams met up in Bristol for two days which included a management consultancy workshop during day 1. External management consultants were brought in to deliver a workshop to the full team on how to work as UK LLC grow. UK LLC management group came away with points to work on moving forward. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC Linked Data Review Panel 26 January 2024 |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Linked Data Review Panel which includes Longitudinal Population Study managers met to review UK LLC application llc_0030 against NHS England's criteria. Suggestions for amends were made before this approving this project and were fed back to the researcher. |
| Year(s) Of Engagement Activity | 2024 |
| Description | UK LLC Meeting with Akrivia Health |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | UK LLC met with Akrivia to discuss linking to longitudinal cohorts and the prospect of linking with data in UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC Meeting with DATAMIND |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | UK LLC met with DATAMIND regarding a collaboration - alliance funding call discussion. Discussions were made about applying for future funding to add DATAMIND to UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC Meeting with NHS England and Public Involvement Contributors |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | This workshop was to discuss how best to support the transition from previous ways of working based on legacy consents to enable a TRE/SDE for longitudinal research). UK LLC focused on how to reduce the burden on the system for managing applications from longitudinal studies and developing frameworks that can also be applied to other routes including OpenSAFELY. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC Meeting with Viking Study |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Co-Director and Research Manager met with leaders of Viking study (Scottish based cohort) regarding on-boarding to UK LLC. This has sparked further discussion about costings for this. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC Presentation to Data Loch |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Edinburgh team presented to DataLoch (an organisation based at the University of Edinburgh) who work in a similar way to UK LLC. UK LLC and DataLoch were able to share ideas for future activity, such as linking to GP data in order to not recreate the wheel. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC Public Advisory Group Meeting 15 January |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | UK LLC Public Advisory Group met to discuss the following points: -UK LLC updates -Transparency Standards Survey Discussing any amends for the survey sent out with this agenda -AWAHRD Project Feedback -Public Involvement Programme Update and Refresh - timings The panel helped to refine the survey and also fed into a tribute for a panel member who sadly passed away. |
| Year(s) Of Engagement Activity | 2024 |
| Description | UK LLC Public Advisory Group Meeting 19 February |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | UK LLC Public Advisory Group met to discuss the following items: Transparency Standards Payment Policy Revisions Public Involvement Programme Update and Refresh UK LLC Team Meeting Citizen Panel The panel were given a task to comment and feedback on transparency standards text regarding the law and study data prior to the meeting. Further discussions around this were had and suggestions made from the panel. |
| Year(s) Of Engagement Activity | 2024 |
| Description | UK LLC Public Advisory Group Meeting 27 November |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | UK LLC Public Advisory group met to discuss the following items: New projects requiring PAG and Public Involvement Network involvement: AWAHRD - a project looking at linking occupational data UK Health Data Research Alliance Transparency Standards - Longitudinal Population Study Data and the Law Public Involvement Programme Update and Timings Updating the PAG Terms of Reference New members/recruitment plan |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC Public Advisory Group Meeting 4 September |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | UK LLC Public Advisory Group meeting was held to discuss the following: UK LLC updates PRUK ADR UK Conference NHS England meeting Our promises to you Research Data Scotland Abstract Animation update Public contributors expressed interest in attending the ADR UK Conference. Public contributors fed into the wording for 'UK LLC Our Promises to you'. Feedback was provided for development of new animation. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC Public Involvement Q&A with Management |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | UK LLC's full public involvement program were invited to an annual UK LLC management Q&A and update. Public contributors heard about UK LLC updates over the year and future plans. They were then able to ask questions and challenge the management team which gave some valuable feedback. |
| Year(s) Of Engagement Activity | 2024 |
| Description | UK LLC Strategic Advisory Group Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | UK LLC Strategic Advisory Committee (SAC) met (bi-annual meetings). SAC members were very supportive of the progress made by UK LLC and enquired as to the extent of data coverage from devolved nations. Items discussed and actions are as follows: RAP Process #01 To check with UK Statistics Authority whether the RAP process of not assessing every application has been tested. UK LLC Website #02 To add testimonials and quotes from PPIE members to the UK LLC website. UK LLC Research Users #03 UK LLC to consider applying an upper limit to the number of users (per project) at the beginning of the project. Automation #04 UK LLC should prioritise identification of a suitable individual/supplier to be responsible for the progression of the automation process. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC stand hosted at ADR UK Conference |
| 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 | Members for the UK LLC attending the Administrative Data Research UK Conference in Birmingham in November. Many delegates visited the UK LLC stand and various presentations and inquired for further information regarding public involvement and doing research in UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC/ONS/HMRC/DWP/DfE Task and Finish Working Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd and Emma Turner led fortnightly UK LLC/ONS/HMRC/DWP/DfE Task and Finish Group meetings from July 2023 to March 2024, providing updates on behalf of UK LLC to the government departments and working in collaboration with them to reach agreements on how to link their data to UK LLC in line with legal, technical and governance requirements. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UKRI Data Policy Group Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Andy Boyd and Robin Flaig met with Laura Morrell (ESRC UKRI), Richard Welpton (ESRC UKRI), Bridget Taylor (ESRC UKRI), Tamsyn Derrick (MRC UKRI), Nicholas Wareham (MRC, Cambridge University) and Paul Colville-Nash (MRC UKRI) to discuss the framework for evaluation of consent co-developed with NHS England and alignment/complementarity with other consent activities. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Workshop on using the Census LS for occupational health research |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd attended a workshop organised by Health and Safety Executive to discuss opportunities to use the Census longitudinal study and UK LLC for investigating link between work and outcomes such as cancer and mortality and apply for funding. |
| Year(s) Of Engagement Activity | 2023 |