Consolidating the UK Longitudinal Linkage Collaboration for the longitudinal research community.
Lead Research Organisation:
University of Bristol
Department Name: Social Medicine
Abstract
The UK Longitudinal Linkage Collaboration (UK LLC) is a research resource providing a 'Trusted Research Environment' (TRE) that enables safe, secure and privacy-protecting analyses of longitudinal research data. UK LLC contains data on many aspects of the lives of more than 200,000 volunteer participants in 20+ Longitudinal Population Studies (LPS). These are studies measuring volunteers' social and economic circumstances, health, development and wellbeing, and changes in these, over time. By bringing this data together with their NHS records, the UK LLC is facilitating research that meets the needs of all our communities across the UK, improving lives by better understanding determinants of health, and informing improvements to public health policy and services.
Purpose: Through the UK LLC we hope to find out more about how we can improve people's lives than was possible before this way of working was set up. We are now up and running: hosting study data provided by research volunteers linked with their NHS data and data about the environment we live in. Approved researchers within the LHW have started their analyses.
We seek funding to extend the scope of this innovative resource, making it a long-term solution that supports studies and helps researchers answer important research questions and help improve the lives of people across the UK. We want to enhance the resource by adding earnings, employment, benefit and education records. Availability of a wide variety of linked data available through a single application will enable researchers to conduct better investigations of interactions between health, society and the environment, address government research priorities and more efficiently respond to the UK's emerging economic, social and health needs.
Objectives: It is essential that we further develop the UK LLC and build on our core function as a high-quality 'research-ready' scientific resource. We will deliver our proposal through our skilled data management, operational management and governance teams with expert executive and governance structures in place. We will:
- Expand the UK LLC beyond COVID-19 research to benefit all; working with studies and the public to ensure this is done safely and transparently
- Maximise available linked data by linking employment, benefits and education records
- Develop supporting guides and documentation for approved researchers
- Create a library of the tools (eg, software code) and methods developed by UK LLC staff and researchers using the TRE, to allow future users to check and re-use them
- Widen visibility and access to data using the 'five safes' application approach with public input and in line with FAIR data principles (making data Findable, Accessible, Interoperable and Reusable).
- Support studies and the research community to work effectively together.
We also propose expansion of our public involvement model by piloting a novel 'Citizen Panel', a concept developed by Understanding Patient Data. This pilot will establish a dialogue between the data community and wider public that ensures good governance and enhances mutual learning.
These enhancements will be in addition to our core function, funded through the NCS programme.
Benefits: Research is facilitated by diverse data because our society, and health and wellbeing issues, are also diverse. Bringing this data together will help us understand more about health, social and environmental inequalities and regional differences and opportunities across the four nations.
By increasing the number of public contributors we interact with we will inform wider efforts to build confidence in this way of working with data that will prove beneficial to the public and wider research community.
Purpose: Through the UK LLC we hope to find out more about how we can improve people's lives than was possible before this way of working was set up. We are now up and running: hosting study data provided by research volunteers linked with their NHS data and data about the environment we live in. Approved researchers within the LHW have started their analyses.
We seek funding to extend the scope of this innovative resource, making it a long-term solution that supports studies and helps researchers answer important research questions and help improve the lives of people across the UK. We want to enhance the resource by adding earnings, employment, benefit and education records. Availability of a wide variety of linked data available through a single application will enable researchers to conduct better investigations of interactions between health, society and the environment, address government research priorities and more efficiently respond to the UK's emerging economic, social and health needs.
Objectives: It is essential that we further develop the UK LLC and build on our core function as a high-quality 'research-ready' scientific resource. We will deliver our proposal through our skilled data management, operational management and governance teams with expert executive and governance structures in place. We will:
- Expand the UK LLC beyond COVID-19 research to benefit all; working with studies and the public to ensure this is done safely and transparently
- Maximise available linked data by linking employment, benefits and education records
- Develop supporting guides and documentation for approved researchers
- Create a library of the tools (eg, software code) and methods developed by UK LLC staff and researchers using the TRE, to allow future users to check and re-use them
- Widen visibility and access to data using the 'five safes' application approach with public input and in line with FAIR data principles (making data Findable, Accessible, Interoperable and Reusable).
- Support studies and the research community to work effectively together.
We also propose expansion of our public involvement model by piloting a novel 'Citizen Panel', a concept developed by Understanding Patient Data. This pilot will establish a dialogue between the data community and wider public that ensures good governance and enhances mutual learning.
These enhancements will be in addition to our core function, funded through the NCS programme.
Benefits: Research is facilitated by diverse data because our society, and health and wellbeing issues, are also diverse. Bringing this data together will help us understand more about health, social and environmental inequalities and regional differences and opportunities across the four nations.
By increasing the number of public contributors we interact with we will inform wider efforts to build confidence in this way of working with data that will prove beneficial to the public and wider research community.
Organisations
- University of Bristol (Lead Research Organisation)
- University of Glasgow (Collaboration)
- TEDS Research Centre (Collaboration)
- ST GEORGE'S UNIVERSITY OF LONDON (Collaboration)
- Bradford Institute for Health Research (BIHR) (Collaboration)
- UNIVERSITY OF ABERDEEN (Collaboration)
- Health and Safety Executive (Collaboration)
- Understanding Society (Collaboration)
- Norwegian Institute of Public Health (Collaboration)
- Medical Research Council (MRC) (Collaboration)
- UNIVERSITY OF ESSEX (Collaboration)
- UNIVERSITY OF SOUTHAMPTON (Collaboration)
- Generation Scotland (Collaboration)
- University of Bristol (Collaboration)
- University of Manchester (Collaboration)
- University College London (Collaboration)
- UNIVERSITY OF LEICESTER (Collaboration)
- UNIVERSITY OF NOTTINGHAM (Collaboration)
- University of Plymouth (Collaboration)
- QUEEN'S UNIVERSITY BELFAST (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- Meteorological Office UK (Collaboration)
- English Longitudinal Study of Ageing (ELSA) (Collaboration)
- HEALTH DATA RESEARCH UK (Collaboration)
- Millennium Cohort Study (MCS) (Collaboration)
- NHS Wales Informatics Service (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
Publications
Berman, S
(2022)
UK LLC Data Resource Profile
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 | Contribution to Our Future Health programme development |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| 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 | Providing expert advice to LPS and academics outside of the National Core Studies on data-linkage and applications to NHS Digital |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Has influenced the practice of submissions for linked health data. The outcome of the submissions intend to influence public health but have yet to be realised. |
| 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 | UK LLC contribution to Wellcome Trust Strategy development |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to new or improved professional practice |
| 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 |
| Description | Improving Transparency of Processes for Accessing Health Data for Research Purposes |
| Amount | £12,365 (GBP) |
| Funding ID | HDRUK2023.0463 |
| Organisation | Health Data Research UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 03/2024 |
| Description | Infrastructure and Services - Trust and Transparency |
| Amount | £5,791,224 (GBP) |
| Funding ID | HDR-23003 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2023 |
| End | 03/2028 |
| Description | Social and Environmental Determinants of Health |
| Amount | £4,999,742 (GBP) |
| Funding ID | HDR-23010 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2023 |
| End | 03/2028 |
| Description | UK Longitudinal Linkage Collaboration: the transformative Trusted Research Environment for the UK longitudinal research community |
| Amount | £6,631,094 (GBP) |
| Funding ID | MR/X021556/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 05/2028 |
| Title | UK LLC TRE User Guide YouTube playlist |
| Description | A YouTube playlist of short videos each walking through the use of a certain aspect or software in the UK LLC TRE. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | Grants users an accessible alternative to the written User Guide document, making the UK LLC resource more accessible. |
| URL | https://www.youtube.com/@ukllcollab |
| 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 | Health and Safety Executive - PROTECT National Core Study |
| Organisation | Health and Safety Executive (HSE) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | A collaboration seeking to understand what occupational data in UK LLC could be developed to inform COVID-19 transmission risk and the impact of occupational mitigation strategies on transmission. |
| Collaborator Contribution | Collaborators bring expertise in occupational health research, disease transmission risk and occupational health policy. |
| Impact | * A successful UK LLC research project with policy relevant outputs (https://ukllc.ac.uk/data-use-register/llc_0007) which contributed to PROTECT NCS and HSE policy. * Led to the creation of partnership with the AWAHRD group which led to two successful funding bids (one from Health & Safety Executive, one NIHR). |
| Start Year | 2021 |
| 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_0004: Examining the serological response to SARS-CoV-2 infection and vaccination across the National Core Studies (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 | 2021 |
| Description | Research Data Use LLC_0005: Are immune-mediated diseases risk factors for long COVID? (Dylan Williams) |
| 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 | 2021 |
| Description | Research Data Use LLC_0006: Comparing the burden of long COVID in the community as measured by self-report and electronic health records: a study by the CONVALESCENCE consortium (Dylan Williams) |
| 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. The collaboration enabled the following publication: The long COVID evidence gap: comparing self-reporting and clinical coding of long COVID using longitudinal study data linked to healthcare records Anika Knuppel, Andy Boyd, John Macleod, Nishi Chaturvedi, Dylan M Williams medRxiv 2023.02.10.23285717; doi: https://doi.org/10.1101/2023.02.10.23285717 |
| Start Year | 2021 |
| Description | Research Data Use LLC_0007: Multi-Longitudinal Cohort Study into occupational factors and COVID Risk as part of PROTECT National Core Study (Matthew Gittins) |
| Organisation | University of Manchester |
| 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 | 2021 |
| Description | Research Data Use LLC_0008: Risk factors and prediction models for long COVID: analysis of longitudinal cohort studies with linked NHS data (Yinghui Wei) |
| Organisation | University of Plymouth |
| 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_0009: Understanding the impacts of healthcare disruption on health (Mark Green) |
| 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. The collaboration enabled the following publication: Green M A, McKee M, Hamilton O K, Shaw R J, Macleod J, Boyd A et al. Associations between self-reported healthcare disruption due to covid-19 and avoidable hospital admission: evidence from seven linked longitudinal studies for England BMJ 2023; 382 :e075133 doi:10.1136/bmj-2023-075133 |
| Start Year | 2022 |
| Description | Research Data Use LLC_0010: Association of COVID-19 and Long COVID with disruption in employment and finances (Richard Shaw) |
| 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. The collaboration enabled the following publication: Associations between SARS-CoV-2 infection and subsequent economic inactivity and employment status: pooled analyses of five linked longitudinal surveys Richard J Shaw, Rebecca Rhead, Richard J Silverwood, Jacques Wels, Jingmin Zhu, Olivia KL Hamilton, Giorgio Di Gessa, Ruth CE Bowyer, Bettina Moltrecht, Michael J Green, Evangelia Demou, Serena Pattaro, Paola Zaninotto, Andy Boyd, Felix Greaves, Nish Chaturvedi, George B. Ploubidis, Srinivasa Vittal Katikireddi medRxiv 2023.07.31.23293422; doi: https://doi.org/10.1101/2023.07.31.23293422 |
| Start Year | 2022 |
| Description | Research Data Use LLC_0012: Impacts of the COVID-19 pandemic on access to NHS care in the UK: An analysis of linked Understanding Society and NHS electronic records data (Michaela Benzeval) |
| Organisation | University of Essex |
| 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_0014: TRACK-COVID study: a population-based epidemiological investigation of COVID-19 virus infection (Emanuele Di Angelantonio) |
| Organisation | University of Cambridge |
| 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_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 | UK LLC disclosure control pipeline |
| Description | Before data is made available to researchers, it must pass a secondary disclosure control check. This is a failsafe check to catch any disclosure risks not identified before data was loaded into the UKLLC Database. The check involves an automated pass to identify and new or changed database tables and identify possible risks. A UK LLC operator then review each for these tables, using the automatically suggested potential risks as guidance. Only once a table has been explcitly approved by the operator will it be available to researchers. |
| Type Of Technology | Software |
| Year Produced | 2022 |
| Impact | The impact is direct in that the software program helps UK LLC data manager ensure the affective anonymity of the TRE is maintained. |
| 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 | Animation Feedback from Public Advisory Group |
| 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 | The PAG provided feedback on the set of three animations being developed. Feedback included if it was easily digestible, clear and lay friendly. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | Attended Women in Data Science 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 | Two UK LLC staff members attended the Women in Data Science conference in Edinburgh where they listened to engaging presentations and networked with like-minded individuals. Staff members spoke about the ongoing work of UK LLC wich increased interest. |
| 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 | Attending ESRC Future Data Services Consultation Meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The director and deputy director attended the ESRC future data services consultation meeting in January. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Attending an HDR UK Community Meeting in Edinburgh |
| 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 Edinburgh team attended either online or in-person the HDR UK community meeting in Edinburgh. The meeting was held to help build these partnerships, and nurture a strong and collaborative community for health data research. In preparation for the launch of HDR UK's new five-year strategy in April 2023, the meetings aim to bring HDR UK colleagues and stakeholders in the health data research sector together in-person to: • Build connections and grow the HDR UK network • Identify challenges, opportunities and priorities across the health data research ecosystem that HDR UK can support • Showcase work ongoing across HDR UK's regional networks and consider how this should inform and support HDR UK's future strategy. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/hdr-uk-community-meeting-edinburgh-24th-january-2023-tickets-41800302... |
| Description | BHF Data science Centre and UK LLC Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Three members from UK LLC met with BHF Data Science Center to discuss and advise how to do ethics and linkage applications. An exchange of knowledge led to UK LLC developing an ethics decision tree. Additionally, UK LLC received guidance on how best to apply for various linkages, such as for environmental data. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Blog on "Involving the public in our work" |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A blog outlining how the public are involved in the work of UK LLC. This blog also includes how the working groups were set up. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukllc.ac.uk/blog/2023/01/10/involving-the-public-in-our-work.html |
| Description | Bristol GP Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Provided insights to GPs and Practice managers as to NHS/DHSC policy and what this means for researcher requests and the use of health records in longitudinal studies |
| Year(s) Of Engagement Activity | 2022 |
| Description | CLOSER Data Linkage Community of Practice (March 2023) |
| 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 chaired the CLOSER Data Linkage Community of Practice Meeting. This includes membership of >20 UK LPS and is designed to help share best practice, the sharing of precedents and to workshop barriers and shared issues. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://closer.ac.uk/our-networks/closer-data-linkage-working-group/ |
| 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 | Chaired a panel discussion - NHS Digital Researcher Roadshow |
| 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 chaired a session at the NHS Digital Researcher Roadshow discussing data science career options. This was aimed at early career academics and particularly at NHS based analytical staff aiming to understand opportunities as the NHS move the SDE way of working and the emphasis on data science increases. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://digital.nhs.uk/services/research-advisory-group/events/exploring-health-data-science |
| Description | Challenges and Opportunities for ESRC Future Data Services |
| 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 | Outlined challenges and opportunities from a UK LLC perspective |
| Year(s) Of Engagement Activity | 2022 |
| 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 | Clean Air Programme Data Science Integration Steering Committee |
| 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 to the Data Science Integration Steering Committee on UK LLC and its potential for integrating health and environmental exposure data for cross cutting research into the health impacts of poor air quality. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Consultative Call to University of Cardiff Regarding PPIE |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | The communications and engagement officer presented about UK LLC public involvement program and how it was built from the ground up. This provided knowledge exchange to the Cardiff team in order to inform the design of their PPIE programme. |
| Year(s) Of Engagement Activity | 2023 |
| 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 | DHSC Policy workshop: linking health and non health data for research & analysis |
| 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 | Contributed based on insights from UK LLC and UK LPS community needs. Lobbied for aligned TRE/SDE accreditation framework to enable platforms (inc. UK LLC) to efficiently comply with both UK Statistical Authority and NHS SDE accreditation systems. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Data Access Public Review Panel - Review Meeting |
| 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 | The meeting was held to discuss and review how the group is working, any changes recommended, satisfaction levels and if everyone is happy to stay on the panel. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | ESRC Future Data Services Data Access Workshop |
| 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 attended the ESRC Future Data Services scoping meeting to contribute to ESRC data strategy development regarding data access. Providing insights into TRE access mechansims. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Expert panel NIHR/HDR UK |
| 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 | As part of expert NIHR/HDR UK panel contributed to the showcase the UK LLC as a part of the UK health data infrastructure and data assets to the NIHR research community. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | Focus Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Meeting/workshop held with all UK LLC Public Involvement groups to discuss the grant application, ensuring it was in the public benefit. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | Genomics England Newborn genomes programme - Data linkage Expert Advisory 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 | Genomics England are launching the Newborn genomes programme - recruiting 100k babies for a longitudinal research databank. The workshop discussed best practice in consent and fair processing and technical opportunities for record linkage. UK LLC provided insights into fair processing, TRE ways of working, and routes to inter-disciplinary record linkages. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK & Pan-UK Research Data Governance Steering 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 | Presented to the HDR UK & Pan-UK Research Data Governance Steering Group on initiatives to align UK research governance infrastructure in order to develop efficiencies for research users and infrastructure providers/departmental data owners |
| Year(s) Of Engagement Activity | 2022 |
| 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 | HDR UK Consent Workshop (Emma Turner) |
| 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 | Emma Turner presented at the workshop providing insights from the longitudinal research community to the development of the pan-UK Trusted Research Environment policy for the use of consented data. |
| Year(s) Of Engagement Activity | 2022 |
| Description | HDR UK Five Safes Development 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 | Provided expert insights from running a Five Safes' compliant TRE to help develop a national TRE guidance and standards for best practice operations. |
| Year(s) Of Engagement Activity | 2022 |
| Description | HDR UK TRE Legal Toolkit 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 | Gave expert insights from UK LLC governance framework to inform development of a national TRE legal toolkit (including standard Data Access Agreement terms and conditions) to help develop a more efficient UK system for managing access to TREs and speeding up the contracting process. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | HDRUK TRE Webinar - presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Robin Flaig presented on UK LLC trusted research environment during this webinar. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Health Data Alliiance Linking data 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 presented at the linking data workshop on the subject of consent in research and contributed to discussion on the role of consent in the research process. |
| Year(s) Of Engagement Activity | 2023 |
| Description | IPDLN Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Kirsteen Campbell delivered a presentation on 'How public and participant voices have influences the UK LLC and its TRE'. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ipdln.org/2022-conference |
| Description | IPDLN Conference 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Robin Flaig (UK LLC Co-Director) delivered a presentation on 'The Challenges of Creating a New Longitudinal Populations Studies Linked Data Resource' |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ipdln.org/2022-conference |
| Description | IPDLN Conference 2022 Presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by Stela McLachlan - The Challenges of Developing an Applications Process for a New Linked Data Resource |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ipdln.org/2022-conference |
| Description | Joint NIHR/HDRUK webinar: Accessing linked health and administrative data across the national health data infrastructure |
| 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 | Took part in a panel Q&A session with national health data infrastructure representatives. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Longitudinal Health and Wellbeing Conference 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Robin Flaig presented on UK LLC as a new resource for linked data research. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | MRC Lay Summary Review from the Public Advisory Group |
| 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 | The PAG reviewed the MRC lay summary to ensure it could be understood by the public and is lay friendly. |
| Year(s) Of Engagement Activity | 2022 |
| 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 Rob Baxter, Technical Lead for the UKRI Data and Analytics Research Environment Programme (DARE UK) |
| 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 | Discuss how UK LLC and DARE can work together. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | Meeting with UK Statistic Authority |
| 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 UK LLC manages the collation, curation and access to data held in the UK LLC Trusted Research Environment (TRE). To provide assurance to the public, study participants, the contributing studies, the NHS and other national data providers, the UK LLC wishes to demonstrate industry best practice information security through the development, maintenance and continual improvement of an information security management system (ISMS). The UK LLC gained ISO 27001 certification of its ISMS in August 2022 (certificate number: 21069) and is working towards UK Statistics Authority accreditation to allow the flow of government administrative data into the UK LLC using the Digital Economy Act (DEA) as the legal basis. The DEA accreditation scheme comprises both security controls and capability controls. The capability controls framework was recently revised by Petros Saravakos, Senior Data Governance and Policy Officer at the UK Statistics Authority. The UK LLC Information Security Officer and Governance & Policy Manager met with Petros to discuss the implementation of the capability framework at the UK LLC. Subsequent internal meetings mean that the wider team at the UK LLC is now able to put the required policies and procedures in place, with an expected DEA application submission date of November 2022. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Meeting with the OpenSafely PPIE Team |
| 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 | Discussed collaboration on an article on PPIE for Research TREs |
| Year(s) Of Engagement Activity | 2022 |
| Description | Meeting with various people from ODAP (Outbreak Data Analysis Platform) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | UK LLC shared our experience about setting up our ISMS (information security management system) and shared some of our paperwork for them to potentially adapt for their context. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Meting with the British Regional Heart Study Cohort |
| 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 | Provided advice on record linkage strategy and data curation and FAIR access. |
| Year(s) Of Engagement Activity | 2022 |
| Description | NCS Conference 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Delivered Symposium 2: Innovations & Exploration - UK LLC |
| Year(s) Of Engagement Activity | 2022 |
| Description | NHS DigiTRIALS and NATSAL LPS sampling workshop (July 2022) |
| 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 | A workshop held between NHS DigiTRIALS, NATSAL LPS Executive (UCL) and NATSAL. Andy Boyd chaired a knowledge exchange workshop to consider how DigiTRIALS could be used to conduct/support sampling and recruitment using individual-level data. The workshop explored functionality, ethics and governance and the requirement for socio-economic indicators for sampling. There was a focus on inclusion and the objective of identifying heterogenous sampling frames. The need for indicators such as sex, ethnicity and indicators of socio-economic status were explored. The workshop also explored the ability to have inbuilt 'linkage' into the system (ie, where flagging and tracing of participants onto the NHS Spine could happen at the point of sampling). |
| Year(s) Of Engagement Activity | 2022 |
| Description | NHS England Transformation Directorate/ HDR UK Joint Delivery 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 | Contributed based on insights from UK LLC and UK LPS community needs. Lobbied for aligned TRE/SDE accreditation framework to enable platforms (inc. UK LLC) to efficiently comply with both UK Statistical Authority and NHS SDE accreditation systems. |
| Year(s) Of Engagement Activity | 2022 |
| Description | National Core Studies 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 | Contributed to a National Core Studies workshop for post NCS data management strategy and alignment of Longitudinal Study datasets with whole population EHR infrastructure (eg, OpenSAFELY) and the UK Longitudinal Linkage Collaboration. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | PAG meeting and Review |
| 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 | The meeting was held to discuss strategy for UK LLC - future planning, how we communicate, etc. This also included an annual review of the group. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to ALSPAC Engagement Group |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Study participants or study members |
| Results and Impact | Robin Flaig presented on the latest developments within the UK LLC (admin linkages, public involvement and future funding). |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to BHF Data Science |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | UK LLC staff member presented on UK LLC to BHF data science where further discussions were sparked. Ideas were shared on what both UK LLC and BHF data science over lap on and how they can work together. |
| 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 | Presentation to Research Data Scotland - 20 April |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | UK LLC Communications and Engagement Officer presented about UK LLC Public Involvement program to Research Data Scotland (RDS). Ideas were shared and RDS became aware of how to implement an effective Public Involvement program. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Press Release Article for Additional Funding |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | A press article titled "UK Longitudinal Linkage Collaboration (UK LLC) awarded additional funding to support Feasibility Study for linkage to administrative records" was released to outline that UK LLC has been awarded an additional £1.2 million of funding (ES/X000567/1) until the end of 2024 for a Feasibility Study to expand its work on the potential for administrative data linkages to longitudinal population study (LPS) data. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukllc.ac.uk/latest%20news/2023/01/25/uk-longitudinal-linkage-collaboration-uk-llc-awarded-ad... |
| Description | Providing advise to UK Biobank on setting up PPIE |
| 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 | Kirsteen Campbell met with colleagues from UK Biobank to talk about how UK LC set up PPIE and to give advise on how this was done. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Public 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 | Study participants or study members |
| Results and Impact | Spoke through UK LLC strategy and future planning |
| Year(s) Of Engagement Activity | 2022 |
| Description | Public 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 | Study participants or study members |
| Results and Impact | Meeting held to discuss strategy for UK LLC - future planning, how we communicate, etc. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Public 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 | Patients, carers and/or patient groups |
| Results and Impact | The meeting was held to discuss strategy for UK LLC - future planning, how we communicate, etc. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Public Engagement in Data Research Initiative (PEDRI) |
| 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 | Discussed PPIE in UK LLC and the potential for UK LLC to join PEDRI |
| Year(s) Of Engagement Activity | 2022 |
| 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 Biobank Cohort |
| 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 | Provided expert advice on linkage strategies for accessing non-health administrative records (DWP & HMRC data). |
| Year(s) Of Engagement Activity | 2022 |
| 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 LPS - CEDAR |
| 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 provided expert guidance on linkage, TREs and governance to Anna Pearce of Glasgow University regarding the CEDAR project. |
| 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 Blog: Involving the Public in our Work |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Kirsteen Campbell completed a blog about involving the public in UK LLC work. This blog features on UK LLC website and UK LLC social media channels. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukllc.ac.uk/blog/2023/01/10/involving-the-public-in-our-work.html |
| 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 Data Access Public Review Panel 9 December 2022 |
| 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 to review 3 new applications with researchers presenting their projects |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK LLC Edinburgh and Bristol Away Day Meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | UK LLC full team meeting away day was held in Edinburgh. Over the two days, each team with UK LLC held 'workshops' to do a full brainstorm and develop ideas, such as the data discovery app. Two UK LLC Public Contributors joined the team on the second day of meetings and presented about their backgrounds and the impact of their contribution to health research and UK LLC. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK LLC Festive Countdown |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | UK LLC festive countdown involved 12 days of facts or information on the UK LLC. |
| Year(s) Of Engagement Activity | 2022 |
| 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 17 April |
| 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 | The panel discussed a number of points including: Fair Processing FAQ update Working Group Preparing for a negative media incident ADR UK Conference - November 2023 The panel fed back on updated FAQ's for administrative data linkages. Some panel members also volunteered to be part of a new working group to discuss UK LLC mission and aims. The panel fed in on creating a plan in the case of a negative media incident - they suggested to have the reassurance that the incident or complaint is looked at by an independent auditor. Panel member suggested putting the apology early in the email. The tone of the email is phrased such as that it's something that's happened in the past and has been investigated, and then a line drawn under it. This could be phrased more in present tense such as "we are aware this may still be an issue, please do contact us". Abstract on Data Access Public Review Panel has been sent to this group for feedback and they have been asked to co-present. |
| Year(s) Of Engagement Activity | 2023 |
| 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 Advisory Meeting Focus Group - 23 January |
| 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 | All members of UK LLC public involvement program were invited to a brainstorming workshop with senior management team. Topics included ideas around UK LLC vision, mission and aims. |
| 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 Q&A and Public Involvement Training Session |
| 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 | All of UK LLC Public Involvement members were given the opportunity to talk with UK LLC senior management to ask questions and discuss any topics relating to the work being done. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | UK Molecular Epidemiology Group Meeting - Presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by Robin Flaig on: a trusted research environment for the longitudinal research community and Stela McLachlan on the UK LLC application process to access data in the UK LLC TRE. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | USHER Institute Annual Lecture 2022 |
| 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 | A stall held at the USHER institute annual lecture, within the University of Edinburgh. This showcased information on UK LLC and previewed our animation. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Understanding DWP, HMRC and National Pupil Database data requirements for the longitudinal community |
| 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 | Discussion of additional data sets/sources: Objective: -to identify additional DWP/HMRC data of interest which they are not aware of. -to identify the key expo-sure/outcomes they wish to derive so UK LLC can reverse engineer the required data sources. Discover what exposure/outcomes attendees want to derive for research and the scientific justification for these. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Understanding DWP, HMRC and National Pupil Database data requirements for the longitudinal community |
| 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 organised and ran a Pan-UK workshop with domain experts in using DWP and HMRC data to understand data user requirements, to scope the data necessary to underpin diverse requirements of the UK LPS community and to discuss potential requirements for deriving key outcomes and assessing representativeness and developing statistical weightings. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Usher Institute Comms Network Presentation - 12 April |
| 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 | UK LLC Communications and Engagement Officer presented to University of Edinburgh Communications Network on preparing for a negative media incident. The group shared many ideas and suggestions on this to feed into the UK LLC negative social media incident Standard Operating Procedure. |
| 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 |