Phase 1 COVID-19 Longitudinal Health and Wellbeing - National Core Study
Lead Research Organisation:
University College London
Department Name: UNLISTED
Abstract
The Longitudinal Health and Wellbeing National Core Study will improve understanding of COVID-19 infection risk factors, examine the physical and mental health consequences of asymptomatic to hospitalised cases, and assess the impact of population scale mitigation policy. We will unite distinct, but complementary, longitudinal studies already engaged in COVID-19 research, including UK representative population and hospitalised cohorts, household panel surveys, and national primary care registries. These will be enriched with health and administrative data linkage. Linkage, self-reporting and repeat serological assessment will allow greater precision in case assignment. This collective resource will be mined by a consortium of experienced analysts linked to these resources to provide rapid answers to existing and emerging priority research questions. These include physical and mental health impacts and socioeconomic adversity of those who have had COVID-19 infection, evolving impacts on health and socioeconomic inequalities, and uptake, safety and effectiveness of vaccination and determinants of responses. Our outputs will include briefing notes as well as scientific reports in order to optimise policy influence.
Technical Summary
The Longitudinal Health and Wellbeing National Core Study will improve understanding of COVID-19 infection risk factors, examine the physical and mental health consequences of asymptomatic to hospitalised cases, and assess the impact of population scale mitigation policy. We will unite distinct, but complementary, longitudinal studies already engaged in COVID-19 research, including UK representative population and hospitalised cohorts, household panel surveys, and national primary care registries. These will be enriched with health and administrative data linkage. Linkage, self-reporting and repeat serological assessment will allow greater precision in case assignment. This collective resource will be mined by a consortium of experienced analysts linked to these resources to provide rapid answers to existing and emerging priority research questions. These include physical and mental health impacts and socioeconomic adversity of those who have had COVID-19 infection, evolving impacts on health and socioeconomic inequalities, and uptake, safety and effectiveness of vaccination and determinants of responses. Our outputs will include briefing notes as well as scientific reports in order to optimise policy influence.
Phase 1 funding will:
1. Establish a centralised, responsive resource linking data assets from a diverse range of longitudinal population studies with health, social and environmental records, with harmonised governance for processing and research interrogation.
2. Inform population health and social policy by providing evidence, both proactively and in response to customers, of the medium to long term consequences of infection, and of policies to control the pandemic
3. Establish a cadre of highly skilled big data scientists - To support this a further award is made for an additional sum of £74,000 to provide infrastructure to the secondees awarded under the Using data to improve public health: COVID-19 secondment. These additional funds are to be utilised to enable the secondees, where required, to purchase assets in support of their work and this could include but not limited to, scientific and technical software, training courses, data access and travel and subsistence.
Phase 1 funding will:
1. Establish a centralised, responsive resource linking data assets from a diverse range of longitudinal population studies with health, social and environmental records, with harmonised governance for processing and research interrogation.
2. Inform population health and social policy by providing evidence, both proactively and in response to customers, of the medium to long term consequences of infection, and of policies to control the pandemic
3. Establish a cadre of highly skilled big data scientists - To support this a further award is made for an additional sum of £74,000 to provide infrastructure to the secondees awarded under the Using data to improve public health: COVID-19 secondment. These additional funds are to be utilised to enable the secondees, where required, to purchase assets in support of their work and this could include but not limited to, scientific and technical software, training courses, data access and travel and subsistence.
Organisations
- University College London (Lead Research Organisation)
- TEDS Research Centre (Collaboration)
- University of Glasgow (Collaboration)
- OFFICE FOR NATIONAL STATISTICS (Collaboration)
- ST GEORGE'S UNIVERSITY OF LONDON (Collaboration)
- Bradford Institute for Health Research (BIHR) (Collaboration)
- UNIVERSITY OF EDINBURGH (Collaboration)
- UNIVERSITY OF ABERDEEN (Collaboration)
- Health and Safety Executive (Collaboration)
- Understanding Society (Collaboration)
- Bradford Teaching Hospitals NHS Foundation Trust (Collaboration)
- Norwegian Institute of Public Health (Collaboration)
- Medical Research Council (MRC) (Collaboration)
- UNIVERSITY OF ESSEX (Collaboration)
- University of Bristol (Collaboration)
- UNIVERSITY OF SOUTHAMPTON (Collaboration)
- Generation Scotland (Collaboration)
- University College London (Collaboration)
- University of Manchester (Collaboration)
- UNIVERSITY OF LEICESTER (Collaboration)
- UNIVERSITY OF NOTTINGHAM (Collaboration)
- British Heart Foundation (BHF) (Collaboration)
- University of Plymouth (Collaboration)
- QUEEN'S UNIVERSITY BELFAST (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Meteorological Office UK (Collaboration)
- ULSTER UNIVERSITY (Collaboration)
- Economic and Social Research Council (Collaboration)
- English Longitudinal Study of Ageing (ELSA) (Collaboration)
- London School of Hygiene and Tropical Medicine (LSHTM) (Collaboration)
- HEALTH DATA RESEARCH UK (Collaboration)
- Millennium Cohort Study (MCS) (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- NHS Wales Informatics Service (Collaboration)
- KING'S COLLEGE LONDON (Collaboration)
Publications
Abbasizanjani H
(2023)
Harmonising electronic health records for reproducible research: challenges, solutions and recommendations from a UK-wide COVID-19 research collaboration
in BMC Medical Informatics and Decision Making
Aldridge R
(2023)
Estimating disease burden using national linked electronic health records: a study using an English population-based cohort.
in Wellcome Open Research
Andrews C
(2022)
OpenSAFELY: Representativeness of electronic health record platform OpenSAFELY-TPP data compared to the population of England.
in Wellcome open research
Antonelli M
(2022)
Risk factors and disease profile of post-vaccination SARS-CoV-2 infection in UK users of the COVID Symptom Study app: a prospective, community-based, nested, case-control study.
in The Lancet. Infectious diseases
Austin-Zimmerman I
(2023)
Genome-wide association studies and cross-population meta-analyses investigating short and long sleep duration.
in Nature communications
Banerjee A
(2023)
Identifying subtypes of heart failure from three electronic health record sources with machine learning: an external, prognostic, and genetic validation study.
in The Lancet. Digital health
Bann D
(2021)
Changes in the behavioural determinants of health during the COVID-19 pandemic: gender, socioeconomic and ethnic inequalities in five British cohort studies.
in Journal of epidemiology and community health
Barry CJ
(2022)
Pharmacoepidemiology in pregnancy: analysis protocol for an observational cohort study in the UK Clinical Practice Research Datalink.
in Wellcome open research
| Title | Animation- Introduction to the COVID-19 Longitudinal Health and Wellbeing National Core Study |
| Description | This animation describes the structure and aims of the COVID-19 Longitudinal Health and Wellbeing National Core Study and CONVALESCENCE study. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2021 |
| Impact | This animation has been shared widely on social media |
| URL | https://youtu.be/QlCpOcPbFE4 |
| Title | Graph showing user demand model |
| Description | Graph showing User Demand Model The model is based on UKB, DPUK, SAIL, Databank actual user figures |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2022 |
| Impact | None known at present |
| Title | Impact of the COVID-19 Longitudinal Health and Wellbeing National Core Study |
| Description | Bitesize video overview of the Impact of the COVID-19 Longitudinal Health and Wellbeing National Core Study outputs in 2021 |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | This video was used at the CLOSER conference to showcase the impact of the study so far and to highlight challenges that have occurred. |
| URL | https://youtu.be/G8tn5VBdG8M |
| Title | Infographic Summary of the key Convalescence findings so far |
| Description | This infographic summarises the key findings from the the first year of the Convalescence Long Covid Study/ The graphic was made with the patient advisory group and has been shared by the Long Covid support groups on social media. |
| Type Of Art | Artwork |
| Year Produced | 2022 |
| Impact | This Infographic has been shared with the large long covid support groups on social media, it has reached >20K people. |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing/convalescence-long-covid-study-one-year... |
| Title | Infographic showing UK LLC SeRP Process |
| Description | UK LLC professional user Infographics for presentations, awareness raising and promoting the UK LLC as a user environment to the research community |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2022 |
| Impact | None known at present |
| Title | Infographic showing UK LLC User Journey |
| Description | UK LLC professional user Infographics for presentations, awareness raising and promoting the UK LLC as a user environment to the research community |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2022 |
| Impact | None known at present. |
| Title | Infographic showing UK LLC User Journey |
| Description | UK LLC professional user Infographics for presentations, awareness raising and promoting the UK LLC as a user environment to the research community |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2022 |
| Impact | None known at present |
| Title | Infographic showing UK LLC Work Packages & Cross-Cutting Themes |
| Description | UK LLC professional user Infographics for presentations, awareness raising and promoting the UK LLC as a user environment to the research community' |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | None known at present. |
| Title | Infographic showing UK LLC/LPS Future Funding |
| Description | UK LLC professional user Infographics for presentations, awareness raising and promoting the UK LLC as a user environment to the research community |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2022 |
| Impact | None known at present. |
| Title | People with prior mental ill health hit harder by pandemic disruption |
| Description | This bitesize video explains findings from the mental health theme of the COVID-19 Longitudinal Health and Wellbeing National Core Study. In this video Dr Ellen Thompson explains how people who had higher pre-pandemic levels of depression or anxiety have been more severely affected by disruption to jobs and healthcare during the pandemic. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2021 |
| Impact | This video is aimed at a lay audience, it has helped to broaden the dissemination of these findings. |
| URL | https://youtu.be/oa8-hmGzj9s |
| Title | Short Animation Series |
| Description | Short Animation series showing the results of the LH&W Core study. Animations subjects include: Impact, Mental Health, Long COVID, Furlough, Healthcare Disruption, Vaccination and Treatment. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2023 |
| Impact | These animations will help to share the findings of the study widely to reach different stakeholders including policymakers and the public. |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing/short-animation-series |
| Title | UK LLC Animated Logo |
| Description | This is an animated version of the UK LLC Logo |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2020 |
| Impact | This animation was used by the UK LLC and partner studies to reinforce brand identity |
| Title | UK LLC Anonymised Process Graphic |
| Description | A simple graphic showing how the UK LLC anonymise data in the Trusted Research Environment |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | Consistent branding across the whole UK LLC when creating any presentations. Maintaining professionalism and reputability of the UK LLC |
| Title | UK LLC Anonymising People and Adresses Graphic |
| Description | A simple graphic showing how the UK LLC anonymise participants and addresses in the Trusted Research Environment |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | Consistent branding across the whole UK LLC when creating any presentations. Maintaining professionalism and reputability of the UK LLC |
| Title | UK LLC Artwork from animation |
| Description | Still artwork pulled from the UK LLC Animation. A series of imagery |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | Consistent branding across the whole UK LLC when creating anything public-facing. Maintaining professionalism and reputability of the UK LLC |
| Title | UK LLC Branded PowerPoint Template |
| Description | A branded PowerPoint template was developed by external contractors in order for consistent branding across the UK LLC presentations. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | Consistent branding across the whole UK LLC when creating any presentations. Maintaining professionalism and reputability of the UK LLC. |
| Title | UK LLC Data Access Process Info-graphic |
| Description | An info-graphic following the UK LLC brand identity. The info-graphic shows the whole process of the UK LLC data access process from start to finish for researchers and explains exactly how to apply for data. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | The UK LLC is a recognizable organisation and a reputable resource for researchers accessing linked data. The info-graphic additionally feed into the UK LLC brand identity. It allows researchers the information on how to apply to the UK LLC for data and the process for data access. This is able to be shared widely via multiple forums such as Twitter and LinkedIn |
| Title | UK LLC Data Access Process Info-graphic in Welsh |
| Description | An info-graphic following the UK LLC brand identity. The info-graphic shows the whole process of the UK LLC data access process from start to finish for researchers and explains exactly how to apply for data |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2022 |
| Impact | The UK LLC is a recognizable organisation and a reputable resource for researchers accessing linked data. The info-graphic additionally feed into the UK LLC brand identity. It allows researchers the information on how to apply to the UK LLC for data and the process for data access. This is able to be shared widely via multiple forums such as Twitter and LinkedIn |
| Title | UK LLC Introduction to our work |
| Description | This is a 3 minute animation which describes the aims and design of the UK LLC |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2021 |
| Impact | This animation was used by the UK LLC partner studies as part of their fair processing to help explain to their study participants how their data would be used as part of the UK LLC. |
| URL | https://www.youtube.com/watch?v=zFkvpKD3jvs |
| Title | UK LLC Large Info-graphic |
| Description | A large info-graphic following the UK LLC brand identity. The info-graphic shows the whole process of the UK LLC from start to finish for researchers and explains exactly what the UK LLC is including key words and phrases. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | The UK LLC is a recognizable organisation and a reputable resource for researchers accessing linked data. The info-graphic additionally feed into the UK LLC brand identity. It allows study participants, researchers and the general public the information on what exactly the UK LLC is and is able to be shared widely via multiple forums such as Twitter and LinkedIn |
| Title | UK LLC Map of UK |
| Description | A map of the UK was developed that fits in with the UK LLC branding through the colourways. It additionally has logos and icons embedded. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | Consistent branding across the whole UK LLC when using for any communications such as on social media or on presentations. Maintaining professionalism and reputability of the UK LLC |
| Title | UK LLC Public Involvement Framework Info-graphic |
| Description | An info-graphic outlining the framework of the UK LLC Public Involvement Structure |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2022 |
| Impact | Providing information on the framework of the UK LLC Public Involvement which can be shared widely, including on social media. |
| Title | UK LLC Relationship Map |
| Description | UK LLC professional user Infographics for presentations, awareness raising and promoting the UK LLC as a user environment to the research community |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2022 |
| Impact | Not known at present |
| Title | UK LLC Secure Data Graphic |
| Description | A simple graphic showing how the UK LLC secure data in the Trusted Research Environment |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | Consistent branding across the whole UK LLC when creating any presentations. Maintaining professionalism and reputability of the UK LLC |
| Title | UK LLC Staff Headshots |
| Description | Head-shots of the UK LLC staff members taken by a professional photographer for the UK LLC website and social media channels |
| Type Of Art | Image |
| Year Produced | 2021 |
| Impact | Professional and transparent display of the UK LLC staff and team to the wider public and research community |
| URL | https://ukllc.ac.uk/meet-the-team/ |
| Title | UK LLC info-graphic on public involvement |
| Description | An info-graphic following the UK LLC brand identity. The info-graphic shows the whole process of the UK LLC Public Involvement groups and what each involves. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | The UK LLC is a recognizable organisation and a reputable resource for researchers accessing linked data. The info-graphic additionally feed into the UK LLC brand identity. It allows study participants, researchers and the general public the information on what is involved in UK LLC Public Involvement groups and is able to be shared widely via multiple forums such as Twitter and LinkedIn |
| Title | UK Longitudinal Linkage Collaboration Icons and Logo |
| Description | The UK LLC brand identity was reinforced through the creation of the main logo and smaller icons. Many contributed to the development of these and they are now used to head all letters, websites, posters, presentations, social media channels, etc. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | The icons and logos are now used to head all letters, websites, posters, presentations, social media channels, etc. This means that the UK LLC is a recognizable organisation and a reputable resource for researchers accessing linked data. They additionally feed into the UK LLC brand identity. |
| Title | iStock Images |
| Description | 21 iStock images were purchased for use in the UK LLC communications, such as in presentations and posters. These are images that represent the benefits of research - such as of the general public |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2021 |
| Impact | A more inclusive and professional take on UK LLC communications. Representative of public and being in the public benefit. |
| 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 | Cabinet Office Long COVID Teach In |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Cabinet Report |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Cabinet Report on Inequalities in healthcare disruptions during the Covid-19 pandemic: Evidence from 12 UK population-based longitudinal studies |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing/sites/covid_19_longitudinal_health_well... |
| Description | Cabinet Report on mental health inequalities in healthcare, economic, and housing disruption during COVID-19: an investigation in 12 longitudinal studies |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing/sites/covid_19_longitudinal_health_well... |
| 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 | Enhanced service specification Long COVID 2021/22 |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | This NHS Enhanced service specification Long COVID 2021/22, has led to increased number of individuals coded with long COVID, and subsequent referral to specialist services. |
| URL | https://www.england.nhs.uk/wp-content/uploads/2021/06/C1313-ess-long-covid-21-22.pdf |
| 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 | Inequalities in healthcare disruptions during the Covid-19 pandemic: Evidence from 12 UK population-based longitudinal studies |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing/sites/covid_19_longitudinal_health_well... |
| 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 help ensure the NHS Digital GPDPR dataset is suitable for use in longitudinal studies |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | This lobbying raised awareness of the needs of longitudinal studies in relation to GPDPR and specifically that not all longitudinal studies are consented and that the longitudinal studies have a specific national TRE (UK Longitudinal Linkage Collaboration) and local TRE solutions. Reassurances were provided by NHSX and NHSDigital that there was a need to be able to use GPDPR data within a range of high-quality TRE settings not just the NHS Digital TRE and that consent alternatives would be explored within this context. |
| URL | https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-... |
| Description | Long COVID Update to the NHSEI Long Covid Research Subgroup |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | National Core Studies COVID-19 response: Objectives, Impacts, and Legacy |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | This document informs on the key areas of 3 of the National Core Studies |
| URL | https://www.ukri.org/wp-content/uploads/2023/07/MRC-05072023-National-Core-Studies-Objectives-Impact... |
| Description | National GP Alert |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | On behalf of NHS England, we conducted a population-based cohort study investigating the association between warfarin and COVID-19 outcomes compared with direct oral anticoagulants (DOACs). We used the OpenSAFELY platform to analyse primary care data and pseudonymously linked SARS-CoV-2 antigen testing data, hospital admissions and death records from England. We found that during lockdown, some individuals were inappropriately switched from warfarin to DOACs, this led to a national alert to GPs. |
| URL | https://dx.doi.org/10.1186%2Fs13045-021-01185-0 |
| Description | OpenSAFELY report of coverage |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | https://reports.opensafely.org/reports/antivirals-and-nmabs-for-non-hospitalised-covid-19-patients-c... |
| Description | Pan-UK Data Governance Steering Group |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Convening leading governance experts from academia, four-nation NHS, regulatory bodies and government departments (Cabinet office, DHSC) to identify and form high-level strategies to tackle cross-cutting governance barriers for UK data science. |
| Description | Presentation to the US FOOD AND DRUG ADMINISTRATION (FDA) & Center for Biologics Evaluation and Research (CBER), 167th Meeting of the Vaccines and Related Biological Products Advisory Committee, September 17, 2021 |
| Geographic Reach | North America |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | On 17 September 2021, Professor Sterne provided evidence to a panel of the USA Food and Drug Administration (FDA) on the real world effectiveness of covid-19 vaccines, and methodological issues in estimating the efficacy of COVID-19 vaccine, to inform US government decision-making in relation to administration of third/booster does of COVID-19 vaccines. This had implications for design and delivery of an appropriately targeted national healthcare covid-19 vaccination strategy and regulatory framework, as well as for nationwide population health and wellbeing in the context of the ongoing covid-19 pandemic. |
| 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 | Sotrovimab recommendation by NICE |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | On Tuesday 21st Feb NICE reversed their earlier (draft) decision and recommended sotrovimab as treatment of COVID-19 for patients where Paxlovid was not suitable. |
| URL | https://www.nice.org.uk/guidance/gid-ta10936/documents/html-content-10 |
| 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 | ADR/ESRC Studentship |
| Amount | £60,000 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2023 |
| End | 08/2027 |
| Description | An adaptive, mixed methods, longitudinal study of the impact of COVID-19 on health inequalities in families living in Bradford. |
| Amount | £198,680 (GBP) |
| Organisation | Health Foundation |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 02/2021 |
| End | 01/2022 |
| Description | Autoimmune diseases following COVID-19 vaccination |
| Amount | £66,150 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 03/2025 |
| Description | Characterisation, determinants, mechanisms and consequences of the long-term effects of COVID-19: providing the evidence base for health care |
| Amount | £10,000,000 (GBP) |
| Funding ID | MC_PC_20051 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2021 |
| End | 02/2024 |
| Description | Concomitant primary prevention of multiple chronic diseases through data-driven approaches mobilising population-wide longitudinal health records |
| Amount | £2,000,000 (GBP) |
| Funding ID | NIHR303137 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2023 |
| End | 12/2028 |
| Description | Consolidating the UK Longitudinal Linkage Collaboration for the longitudinal research community. |
| Amount | £948,847 (GBP) |
| Funding ID | ES/X000567/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 07/2022 |
| End | 12/2025 |
| Description | DATAMIND: Data Hub for Mental health INformatics research Development |
| Amount | £2,031,434 (GBP) |
| Funding ID | MR/W014386/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2021 |
| End | 08/2024 |
| Description | Diverging dynamic resilience: Using twins to identify frailty drivers independent of shared genetics in the context of the COVID-19 pandemic |
| Amount | £4,510,479 (GBP) |
| Organisation | Wellcome LEAP |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 08/2023 |
| End | 09/2026 |
| Description | ERC - Starting Grant |
| Amount | £1,498,000 (GBP) |
| Organisation | European Research Council (ERC) |
| Sector | Public |
| Country | Belgium |
| Start | 01/2024 |
| End | 12/2029 |
| Description | Efficient AI tools for equitable handling of missing values in population-wide e-health records to advance prevention of chronic diseases |
| Amount | £618,984 (GBP) |
| Funding ID | EP/Y017757/1 |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 04/2025 |
| Description | Harmony: A global platform for contextual harmonization, translation and cooperation in mental health research |
| Amount | £40,000 (GBP) |
| Funding ID | 226697/Z/22/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2022 |
| End | 05/2024 |
| Description | Health Research from Home: advancing population health research using smartphones and wearables (MICA) |
| Amount | £477,848 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2023 |
| End | 10/2026 |
| Description | Impact of COVID-19 on the association between Type 2 diabetes and incidence of cardiovascular diseases |
| Amount | £50,000 (GBP) |
| Funding ID | HDRUK2023.0242 |
| Organisation | Health Data Research UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 04/2024 |
| 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 | Institutional Research Leave Award |
| Amount | £25,000 (GBP) |
| Organisation | University of Aberdeen |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/2024 |
| End | 06/2024 |
| Description | Optimisation of natural language processing for real-time structured clinical data capture in electronic health records |
| Amount | £605,054 (GBP) |
| Funding ID | EP/Y018087/1 |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 04/2025 |
| Description | Research Excellence Award for Emerging Scholars 2023 |
| Amount | £2,000 (GBP) |
| Organisation | University of Sussex |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 02/2023 |
| End | 01/2024 |
| Description | Risk prediction in pancreatic cancer using routine NHS data |
| Amount | £40,000 (GBP) |
| Organisation | National Physical Laboratory |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 03/2024 |
| End | 03/2025 |
| 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 | Supporting Young Bradford |
| Amount | £161,351 (GBP) |
| Organisation | Health Foundation |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2022 |
| End | 04/2024 |
| Description | The Effectiveness and Cost-Effectiveness of a Clinical Violence Prevention Team Based in the Emergency Department |
| Amount | £91,724,336 (GBP) |
| Funding ID | NIHR134055 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2022 |
| End | 08/2024 |
| Description | The first England-wide study of pregnant women with pre-existing heart disease: the impact of Covid-19 diagnosis and vaccination |
| Amount | £50,000 (GBP) |
| Funding ID | HDRUK2023.0239 |
| Organisation | Health Data Research UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 04/2024 |
| Description | The risk of stroke after SARS-CoV-2 in a UK population-wide cohort |
| Amount | £60,000 (GBP) |
| Funding ID | SA_CV_20/100018 |
| Organisation | Stroke Association |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2021 |
| End | 03/2022 |
| Description | TwinsUK: A longitudinal epidemiological and genomic resource |
| Amount | £2,462,449 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2024 |
| End | 12/2028 |
| Description | UK LLC pilot submitted through the ADR UK mechanism but funded with joint contributions from ESRC and MRC |
| Amount | £909,136 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2022 |
| End | 03/2025 |
| 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 |
| Description | Validation of SCORE2 10-year cardiovascular disease risk prediction models before and after the Covid-19 pandemic in the population of England |
| Amount | £50,000 (GBP) |
| Funding ID | HDRUK2023.0237 |
| Organisation | Health Data Research UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 04/2024 |
| Description | Wellcome Mental Health Data Prize |
| Amount | £150,000 (GBP) |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 07/2022 |
| End | 07/2025 |
| Title | Governance uplift of contributing UK LLC studies |
| Description | UK LLC have provided resources and guidance (on strategy and materials) to studies to adapt their existing governance mechanisms for record linkage to enable participation in the UK LLC. This supports the legal basis for the UK LLC and enables the negotiation and creation of single data sharing agreements covering all contributing studies. This distributed governance mechanism is globally unique and an innovation of the UK LLC andLHW NCS. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This has enabled the governance of the UK LLC to be established and data sharing agreements to be established with eg NHS Digital and for negotiations to progress with HM Revenue and Customs, Department for Work and Pensions and Department for Education. |
| Title | ISO 27001 Information Security Management System (ISMS) |
| Description | The UK LLC manages the collation, curation and access to data held in the UK LLC TRE. To provide assurance to the public, longitudinal population study (LPS) participants, the contributing LPS, the NHS and other national data providers, the UK LLC wants to demonstrate industry best practice information security by working towards the establishment of an externally audited and certified ISO 27001:2013 Information Security Management System (ISMS). |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2022 |
| Provided To Others? | No |
| Impact | The implementation of the UK LLC's ISMS has required the development of a suite of policies, standard operating procedures (SOPs) and other documents to protect the confidentiality, integrity and availability of data in the UK LLC's TRE. Policies developed include: POL-ISM-001 Information Security Policy POL-ISM-002 Information Handling Policy POL-ISM-003 Data Access & Acceptable Use Policy POL-ISM-004 Internal Roles, Responsibilities & Access Policy POL-DAT-005 System Development Principles Policy SOPs developed include: SOP-APP-003 Process for Researchers to Apply to Access Data in the UK LLC TRE SOP-ISM-004 Reporting Weaknesses, Events & Incidents SOP-DAT-006 Managing User Access to the UK LLC TRE SOP-DAT-007 Data Provisioning SOP-COM-009 Social Media SOP_APP_010 Process for Researchers to Apply to Amend their Projects SOP_DAT_013 Data Checks: Disclosure Assessment SOP Other documents include: DOC-ISM-001 Scope of the UK LLC DOC-ISM-002 Index of Asset Registers DOC-ISM-003 Risk Register DOC-ISM-004 Statement of Applicability DOC-ISM-005 Information Asset Owner ToR DOC-ISM-006 Senior Information Risk Owner ToR DOC-ISM-007 Caldicott Guardian ToR DOC-ISM-008 Continuous Improvement Log DOC-ISM-009 Business Continuity Plan DOC-ISM-010 Information Security Schedule DOC-ISM-013 PESTLE Analysis of Interested Parties |
| Title | Policies & procedures for the delegated approval mechanism for onward sharing NHS Digital data |
| Description | A set of polices and procedures necessary for the delegated decision making of which applicants can access linked NHS Digital records. These documents include a committee SOP and TOR: these outlines membership, roles and responsibility of UK LLC Data Access Committee in reviewing applications to access UK LLC data on behalf of NHS Digital. This document was endorsed by the UK LLC DAC and will be submitted during the annual reporting round to the UK LLC Strategic Advisory Committee. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Change in the application process review, dividing responsibilities between different Panels. |
| Title | UK LLC - NHS Digital data pipeline - a novel and generalisable mechanism for linking and extracting NHS data for longitudinal research |
| Description | This is a major new data pipeline enabling the UK LLC, individual cohorts or similar studies to load a 'cohort' of individuals to NHS Digital and for these to be linked and for data flow to be maintained over time. This results in major efficiencies for the research community going forward and is highly generalisable. The UK longitudinal Linkage Collaboration (UK LLC) receives data from over 20 studies from the LPS community. Where permissions (consent and section251) are in place, data is also extracted from NHS D on study participants. NHS D datasets include GP, hospital, prescribing, mental health and COVID-19 specific datasets. This is novel in that the UK LLC flow manage the flow of data for multiple studies and perform the extract in one go with data arriving in the UK LLC TRE without UK LLC requiring to handle participant identifiable information. The UK LLC is based on SeRP technology run by the University of Swansea with NHS Digital Health and Care Wales (was NWIS) as a linkage 3rd party. The contributing studies send files of participant identifiers to NHS DHCW as in a file known as a 'File 1'. NHS DHCW process these to the NHS Digital cohort definition template and send these to NHS Digital. NHS Digital link the patients in these files to their systems and extract (+deidentify) healthcare data on these participants and send the files of these back to University of Swansea (as a 'File 2'). The data extracts are refreshed on a monthly basis allowing study participants to be added or withdrawn from the data flows at regular intervals. The receipt and upload of data to the UK LLC database is performed by the Population Data Science development team at Swansea University (SU) and Managed by the UK LLC team at the University of Bristol (UoB). The database sits within the UK LLC's Secure eResearch Platform (SeRP UK). This is a Trusted Research Environment (TRE) enabling research data users a safe a secure method to access and analyse data approved as part of their project. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | The pipeline enables the establishment and sustained operation of longitudinal study linkage to NHS Digital and can be generalised beyond UK LLC. It substantially speeds up the delivery of data, helps ensure integrity through using automated quality assured processes and reduces ongoing burden on the NHS. The pipeline is available via NHS Digital and will be published shortly. HDR UK are adopting this pipeline for the ODAP platform. The pipeline has enabled UK LLC research data users to begin analysing study-collected and linked NHS Digital data on participants from studies where linkage was not previously in place. It also allows cross-study analyses on populations whose data were not previously accessible in one environment. |
| Title | UK LLC Access Process |
| Description | Development of the processes around applying for access to the UK LLC data, including 3-stage review process. This process is based on POL-ISM-003_UKLLC_DataAccessAcceptableUsePolicy_V1 and two internal SOPs: SOP-APP-0003_ProcessForResearchersToApplyToAccessDataInTRE_V1 and SOP-APP-0010_ProcessForResearchersToApplyToAmendTheirProjects_V1. These documents outline the rules of access to the UK LLC, with internal SOPs dealing with step-by-step application, review and amendments process. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Change in the way applicants apply to get an access to data in the UK LLC |
| URL | https://ukllc.ac.uk/apply |
| Title | UK LLC Codelist Template |
| Description | The UK LLC Codelist Template is a tool which allows researchers applying for access to data, specifically linked health records, held in the UK LLC TRE to define the subset of data they need to access in order to carry out their research. The UK LLC onwardly shares data from linked sources, such as NHS Digital, on the condition that data minimisation principles are upheld. Where datasets need to be minimised, the UK LLC subset these datasets by medical codelists (e.g. SNOMED, ICD10, etc.), which can be defined by researchers using the Codelist Template. The request form is managed and maintained outside of the TRE by the Data Team, and is publicly available. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The UK LLC Codelist Template is an integral part of the UK LLC data provision pipeline. During data provision, the completed codelist template is used as an input to the data provisioning pipeline, which automatically provisions database views to approved researchers in the TRE. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Data Access & Acceptable Use Policy |
| Description | The UK LLC Data Access & Acceptable Use Policy (POL-ISM-003) describes the rules, processes and procedures involved when: 1) Applying to access data in the UK Longitudinal Linkage Collaboration (UK LLC) Trusted Research Environment (TRE). 2) Accessing the UK LLC TRE as an approved user. 3) Producing outputs based on data held in the UK LLC. 4) Ensuring the reproducibility of research based on data held in the UK LLC. The policy will help to ensure a transparent, consistent and safe approach for using the UK LLC resource to conduct research that delivers public benefit. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | The policy details the terms and conditions under which researchers apply to and access data held in the UK LLC Trusted Research Environment (TRE). The policy outlines the commitments the UK LLC has made towards: 1) Participants in longitudinal population studies (LPS). 2) Data owners - both the LPS and other data owners, e.g. NHS. 3) Researchers who use the UK LLC resource. The policy also details the ONS's 'Five Safes' Approach that the UK LLC has adopted for its rigorous 3 stage application process and the overarching National Core Studies' data sharing principles. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Data Request Form |
| Description | The UK LLC Data Request Form is a tool which allows researchers applying for access to data held in the UK LLC TRE to browse and request data relevant for their research project. The request form is automatically generated by the UK LLC data pipeline and is managed and maintained outside of the TRE by the Data Team. The request form compiles key information such as block descriptions and keywords, as well as relevant links provided by the LPS and linked data sources about their data. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The UK LLC Data Request Form is an integral part of both the UK LLC application process as well as the data provision pipeline. When a UK LLC Application (including the data request) is approved through the access process, the completed request form is used as an input to the data provisioning pipeline, which automatically provisions database views to approved researchers in the TRE. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. |
| URL | https://ukllc.ac.uk/ |
| 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 | UK LLC privacy preserving flow of address data enabling geographical data assignment |
| Description | The UK longitudinal Linkage Collaboration (UK LLC) is based on SeRP technology run by the University of Swansea with NHS Digital Health and Care Wales (was NWIS) as a linkage 3rd party. The approx. 20 contributing studies will send files of participant identifiers to NHS DHCW as in a file known as a 'File 1'. Information from these File 1's will be sent to University of Leicester for geocoding. Before being sent to Leicester a series of masking fake addresses will be added. These file be generated by the UK LLC data managers using the "Masking address generator" documented in "Software & Technical Products". NHS DHCW will process by appending real address to fake addresses, removing all other identifiers (except encrypted ID) and send the output to the University of Leicester. Leicester will use the patients address data in these files to geocode the addresses and then allocate nationally modelled spatial exposure estimates. The following products will be generated: 1) A de-identified property indicator (encrypted UPRN) with date ranges to be added into the UK LLC SeRP as a 'spine' of residences (as a 'File 2'). 2) File 2s of de-identified exposure estimates data to be added into the UK LLC SeRP as data files (as a 'File 2'). |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2022 |
| Provided To Others? | No |
| Impact | The development of this data flow will allow data on geographical units e.g. encrypted LSOA and associated measures such as IMD (deciles) to flow into the UK LLC. As well as built environment measures such as air pollution (PM10, NO2 etc). These data will both arrive in the UK LLC SeRP and be available in a form that preserves the affective anonymity of the TRE. |
| Title | UKLLC 'How to apply' Guide |
| Description | Document outlining application and review process step-by step |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Helps applicants understand the application and review process ahead of applying to access the data in the UK LLC |
| Title | UKLLC Application form |
| Description | Application form to apply for the access to the data in the UK LLC |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Allowing applicants to describe their proposed projects and other relevant information need to gain access to the data in the UK LLC |
| Title | UKLLC Application form Guide |
| Description | Document offering guidance on how to complete application form, question-by-question |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Helps applicants complete the application form |
| Title | UKLLC CV User Guide |
| Description | Document outlining CV requirements, listing the sections the UK LLC would like to see included in researcher's CVs in order to asses them as Safe Researchers (part of 'Five Safes' framework). |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Helps applicants creating CV as a part of their application to access the data in the UK LLC |
| Title | 1970 British Cohort Study Response Dataset, 1970-2016 |
| Description | The 1970 British Cohort Study (BCS70) began in 1970 when data were collected about the births and families of babies born in the United Kingdom in one particular week in 1970. Since then, there have been nine further full data collection exercises in order to monitor the cohort members' health, education, social and economic circumstances. These took place when respondents were aged 5 in 1975, aged 10 in 1980, aged 16 in 1986, aged 26 in 1996, aged 30 in 1999-2000 (SN 5558), aged 34 in 2004-2005, aged 42 in 2012 and aged 46 in 2016-18. A range of sub-sample and supplementary surveys have also been conducted, and a separate dataset covering response to BCS70 over all waves is available under SN 5641, 1970 British Cohort Study Response Dataset, 1970-2012. Further information about the BCS70 and may be found on the Centre for Longitudinal Studies website. As well as BCS70, the CLS now also conducts the NCDS series. How to access genetic and/or bio-medical sample data from a range of longitudinal surveys: A useful overview of the governance routes for applying for genetic and bio-medical sample data, which are not available through the UK Data Service, can be found at Governance of data and sample access on the METADAC (Managing Ethico-social, Technical and Administrative issues in Data Access) website. The BCS70 Response Dataset contains response outcomes for all main sweeps of BCS70 (1970-2016). The fourth edition (March 2021) includes Sweep 10 outcomes and has been streamlined by removing cases which have never participated in any main sweep survey and are no longer being issued. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | https://cls.ucl.ac.uk/cls-studies/1970-british-cohort-study/ |
| URL | https://beta.ukdataservice.ac.uk/datacatalogue/doi/?id=5641#2 |
| Title | Avon Longitudinal Study of Parents and Children |
| Description | ALSPAC is a longitudinal birth cohort study which enrolled pregnant women who were resident in one of three Bristol-based health districts in the former County of Avon with an expected delivery date between 1st April 1991 and 31st December 1992. Around 14,000 pregnant women were initially recruited. Detailed information has been collected on these women, their partners and subsequent children using self-completion questionnaires, data extraction from medical notes, linkage to routine information systems and from hands-on research clinics. Additional cohorts of participants have since been enrolled in their own right including fathers, siblings, children of the children and grandparents of the children. Ethical approval for the study was obtained from the ALSPAC Ethics and Law Committee (IRB00003312) and Local Research Ethics. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2014 |
| Provided To Others? | Yes |
| Impact | http://www.bristol.ac.uk/alspac/ |
| URL | http://service.re3data.org/repository/r3d100011256 |
| Title | Born in Bradford |
| Description | Born in Bradford is one of the biggest and most important medical research studies undertaken in the UK. The project started in 2007 and is looking to answer questions about our health by tracking the lives of 13,500 babies and their families and will provide information for studies across the UK and around the world. The aim of Born in Bradford is to find out more about the causes of childhood illness by studying children from all cultures and backgrounds as their lives unfold. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | https://borninbradford.nhs.uk/ |
| URL | http://service.re3data.org/repository/r3d100011818 |
| Title | CVD-COVID-UK/COVID-IMPACT |
| Description | See https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/ CVD-COVID-UK established a novel population wide resource in partnership with NHS Digital, comprising of a range of linked datasets covering the entire population of England, including o hospital data o death registrations o primary care data o community dispensing data o Covid-19 vaccination data and lab test o Data from intensive care units and from cardiovascular specialist registries • |
| Type Of Material | Data analysis technique |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Results from analyses using this research database have informed national COVID-19 Advisory Groups and public health agencies on COVID-19 vaccine safety. |
| URL | https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/ |
| Title | Covid 19 questionnaire dataset |
| Description | NSHD study members were sent upto three online/postal questionnaires on COVID. In the first questionnaire, a variety of questions were asked to capture a physical and mental health and wellbeing, family and relationships, education, work, and finances during the first national lockdown. In the second questionnaire, we repeated many of the topic areas as in Wave 1, but included questions on health care, financial transfer and life events. For the third questionnaire, we additionally asked about the vaccination programme and long COVID. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Too early to say - numerous publications and impacts will be produced using these data in the future |
| URL | https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8732 |
| Title | English Longitudinal Study of Ageing: Waves 0-9, 1998-2019 |
| Description | The English Longitudinal Study of Ageing (ELSA) is a longitudinal survey of ageing and quality of life among older people that explores the dynamic relationships between health and functioning, social networks and participation, and economic position as people plan for, move into and progress beyond retirement. The main objectives of ELSA are to: construct waves of accessible and well-documented panel data; provide these data in a convenient and timely fashion to the scientific and policy research community; describe health trajectories, disability and healthy life expectancy in a representative sample of the English population aged 50 and over; examine the relationship between economic position and health; investigate the determinants of economic position in older age; describe the timing of retirement and post-retirement labour market activity; and understand the relationships between social support, household structure and the transfer of assets. Further information may be found on the ELSA project website, the Institute for Fiscal Studies: ELSA and Natcen Social Research: ELSA web pages. Health conditions research with ELSA - June 2021 The ELSA Data team have found some issues with historical data measuring health conditions. If you are intending to do any analysis looking at the following health conditions, then please contact elsadata@natcen.ac.uk for advice on how you should approach your analysis. The affected conditions are: eye conditions (glaucoma; diabetic eye disease; macular degeneration; cataract), CVD conditions (high blood pressure; angina; heart attack; Congestive Heart Failure; heart murmur; abnormal heart rhythm; diabetes; stroke; high cholesterol; other heart trouble) and chronic health conditions (chronic lung disease; asthma; arthritis; osteoporosis; cancer; Parkinson's Disease; emotional, nervous or psychiatric problems; Alzheimer's Disease; dementia; malignant blood disorder; multiple sclerosis or motor neurone disease). How to access genetic and/or bio-medical sample data from a range of longitudinal surveys: A useful overview of the governance routes for applying for genetic and bio-medical sample data, which are not available through the UK Data Service, can be found at Governance of data and sample access on the METADAC (Managing Ethico-social, Technical and Administrative issues in Data Access) web site. Harmonised dataset: The Harmonised dataset is originally compiled in Stata, and contains extra alphabetic missing value codes. An SPSS version is also deposited, but as SPSS does not accommodate alphabetic missing value codes in numeric variables, the codes have transferred as long numeric codes. While the missing values are fully labelled, users should be aware that only the Stata alphabetic codes are described in the documentation. Users who prefer to use the Stata version will need access to Stata SE/MP software, as the file contains over 2,047 variables (the limit for the standard Stata 'Intercooled' version). ELSA COVID-19 study: A separate ad-hoc study conducted with ELSA respondents, measuring the socio-economic effects/psychological impact of the lockdown on the aged 50+ population of England, is also available under SN 8688, English Longitudinal Study of Ageing COVID-19 Study. Wave 1 was first released on 30 September 2020. Latest edition of ELSA: For the 35th edition (July 2021), mortality variables Mortstat, Yrdeath, agedead2 and maincod have been removed from the index file at the depositor's request, due to finalised agreement with NHS Digital. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | https://www.ucl.ac.uk/epidemiology-health-care/research/behavioural-science-and-health/research/psychobiology/english-longitudinal-study-ageing-0 |
| URL | https://beta.ukdataservice.ac.uk/datacatalogue/doi/?id=5050#21 |
| Title | Generation Scotland SFHS Data Dictionary |
| Description | The GS:SFHS Data Dictionary is a set of information describing the contents, format, and structure of the phenotype data collected during recruitment (2006-2011) to the Generation Scotland Scottish Family Health Study (GS:SFHS), or derived subsequently from study data collected during recruitment. This dataset replaces the one at https://datashare.is.ed.ac.uk/handle/10283/2724 |
| Type Of Material | Database/Collection of data |
| Year Produced | 2018 |
| Provided To Others? | Yes |
| Impact | https://www.ed.ac.uk/generation-scotland |
| URL | https://datashare.ed.ac.uk/handle/10283/2988 |
| 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 | Geography and Longitudinal Data: Understanding Society The UK Household Longitudinal Study |
| Description | Understanding Society is the largest longitudinal study of its kind and provides crucial information for researchers and policymakers on the changes and stability of people's lives in the UK. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2018 |
| Provided To Others? | Yes |
| Impact | https://www.understandingsociety.ac.uk/research/impact |
| URL | http://rgdoi.net/10.13140/RG.2.2.15806.54089 |
| Title | MRC NSHD 2013-2018 Data |
| Description | The MRC National Survey of Health and Development (NSHD) has informed UK health care, education and social policy for more than 50 years and is the oldest and longest running of the British birth cohort studies. Today, with study members in their seventies, the NSHD offers a unique opportunity to explore the long-term biological and social processes of ageing and how ageing is affected by factors acting across the whole of life. From an initial maternity survey of 5362 births recorded in England, Scotland and Wales during one week of March 1946, a socially stratified sample of singleton babies born to married parents was selected for follow-up. These participants have been studied over twenty times throughout their life. During their childhood, the main aim of the NSHD was to investigate how the environment at home and at school affected physical and mental development and educational attainment. During adulthood, the main aim was to investigate how childhood health and development and lifetime social circumstances affected their adult health and function and their change with age. Now, as participants have reached retirement, the research team is developing the NSHD into a life course study of ageing. Study members were asked to attend a clinic at age 60-64 for a range of assessments (or alternatively have a home visit). They were invited for a home visit at 69 years, updating information on health, lifestyle and life circumstances as well as obtaining repeat physical and cognitive measurements. Postal questionnaires were completed before the clinic and home visits. A subset of 500 study members are also being invited to participate in a Neuroscience sub-study. This publication covers data from the NSHD for the years 2013 to 2018. The cohort study is ongoing and further data collections are being added, while component data sets are separately referable. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | Data provided for linkage within UK LLC |
| URL | http://www.nshd.mrc.ac.uk/data/nshd-digital-object-identifiers/mrc-nshd-2013-2018-data/ |
| Title | Millennium Cohort Study |
| Description | Socio-emotional behaviours in early childhood, including self-regulation, emotional problems, and peer problems, have been shown to individually influence academic achievement in primary and secondary school. Environmental and demographic factors have also been shown to influence a child's academic development. The current study extends previous work to consider - concurrently, using structural equation modelling - a broader array of antecedents and measures of social-emotional development to understand their relative effects on academic outcomes. Parent-report data on a nationally representative sample of children (n = 17,035) at ages 3 and 5 years, and academic assessment at age 7, were drawn from the Millennium Cohort Study for longitudinal modelling. Results indicate the individual and collective contribution of socio-emotional, environmental, and demographic antecedents, expanding the current literature on predictors of child academic achievement in primary school. The results suggest that malleable factors in early childhood are important predictors of later academic success, and thus may be viable targets for intervention. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2017 |
| Provided To Others? | Yes |
| Impact | https://cls.ucl.ac.uk/cls-studies/millennium-cohort-study/ |
| URL | http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/36952/version/1 |
| 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. |
| Title | National Child Development Study: Activity Histories, 1974-2013 |
| Description | The National Child Development Study (NCDS) originated in the Perinatal Mortality Survey (see SN 5565), which examined social and obstetric factors associated with still birth and infant mortality among over 17,000 babies born in Britain in one week in March 1958. Surviving members of this birth cohort have been surveyed on eight further occasions in order to monitor their changing health, education, social and economic circumstances - in 1965 at age 7, 1969 at age 11, 1974 at age 16 (the first three sweeps are also held under SN 5565), 1981 (age 23 - SN 5566), 1991 (age 33 - SN 5567), 1999/2000 (age 41/2 - SN 5578), 2004-2005 (age 46/47 - SN 5579), 2008-2009 (age 50 - SN 6137) and 2013 (age 55 - SN 7669). There have also been surveys of sub-samples of the cohort, the most recent occurring in 1995 (age 37), when a 10% representative sub-sample was assessed for difficulties with basic skills (SN 4992). Finally, during 2002-2004, 9,340 NCDS cohort members participated in a bio-medical survey, carried out by qualified nurses (SN 5594, available under more restrictive Special Licence access conditions; see catalogue record for details). The bio-medical survey did not cover any of the topics included in the 2004/2005 survey. Further NCDS data separate to the main surveys include a response and deaths dataset, parent migration studies, employment, activity and partnership histories, behavioural studies and essays - see the NCDS series page for details. Further information about the NCDS can be found on the Centre for Longitudinal Studies website. How to access genetic and/or bio-medical sample data from a range of longitudinal surveys: A useful overview of the governance routes for applying for genetic and bio-medical sample data, which are not available through the UK Data Service, can be found at Governance of data and sample access on the METADAC (Managing Ethico-social, Technical and Administrative issues in Data Access) website. The purpose of the National Child Development Study: Activity Histories, 1974-2013 was to merge all data on work and non-work activities in successive sweeps into one longitudinal dataset. Data on work and non-work activities lasting one month or more have been collected in all NCDS sweeps from sweep 4 (age 23) onwards. The focus of the questions asked at each sweep vary from: work activities engaged in since leaving school (sweep 4 aged 23); work and non-work activities engaged in since leaving school (sweep 5, aged 33); work and non-work activities engaged in since the last sweep (sweep 6, aged 42); work and non-work activities engaged in since the last sweep or aged 16 (sweep 7, aged 46) work and non-work activities engaged in since 2000, or 2004 if included in sweep 7 (sweep 8, aged 50), work and non-work activities engaged in since 2004, or 2008 if included in sweep 8 (sweep 9, aged 55). Therefore the activity histories will start from the time that the cohort member left school and continue until the interview date of the latest data sweep that each cohort member participated in. The lengths of the activity histories vary depending on the latest sweep that a cohort member was present at. The minimum activity history length recorded is 1 month and the maximum is 480 months (40 years). Gaps in the activity histories occur where a cohort member has not been present at all sweeps and/or where full activity data were not reported. An employment histories dataset was previously created (Ward, 2007). This work was undertaken as part of the Gender Network Project. The current work on NCDS activity histories builds on this previous activity history and incorporates various cleaning of the data. This previous employment history included data up to sweep 7 (2004) only, did not deal with any non-work activities and did not identify duplicate activities (i.e. where an activity was reported again in a later sweep). Latest Edition Information For the second edition (June 2016) the data and documentation were updated to include the latest NCDS wave, extending coverage to 2013. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | https://cls.ucl.ac.uk/cls-studies/1958-national-child-development-study/ |
| URL | https://beta.ukdataservice.ac.uk/datacatalogue/doi/?id=6942#3 |
| Title | SABRE |
| Description | a UK population-based comparison of cardiovascular disease and diabetes in people of European, South Asian and African Caribbean heritage |
| Type Of Material | Database/Collection of data |
| Year Produced | 2017 |
| Provided To Others? | Yes |
| Impact | Currently, and in the past, supported many research studies aiding hundreds of publications around the world. |
| URL | https://portal.dementiasplatform.uk/CohortDirectory/Item?fingerPrintID=SABRE |
| Title | The Avon Longitudinal Study of Parents and Children - A resource for COVID-19 research: Antibody testing results, April - June 2021 |
| Description | The Avon Longitudinal Study of Parents and Children (ALSPAC) is a prospective population-based cohort which recruited pregnant women in 1990-1992 and has followed these women, their partners (Generation 0; G0) and their offspring (Generation 1; G1) ever since. The study reacted rapidly and repeatedly to the coronavirus disease 2019 (COVID-19) pandemic, deploying multiple online questionnaires and a previous home-based antibody test in October 2020. A second antibody test, in collaboration with ten other longitudinal population studies, was completed by 4,622 ALSPAC participants between April and June 2021. Of 4,241 participants with a valid spike protein antibody test result (8.2% were void), indicating antibody response to either COVID-19 vaccination or natural infection, 3,172 were positive (74.8%). Generational differences were substantial, with 2,463/2,555 G0 participants classified positive (96.4%) compared to 709/1,686 G1 participants (42.1%). Of 4,199 participants with a valid nucleocapsid antibody test result (9.2% were void), suggesting potential and recent natural infection, 493 were positive (11.7%); 248/2,526 G0 participants (9.8%) and 245/1,673 G1 participants (14.6%) tested positive, respectively. We also compare results for this round of testing to that undertaken in October 2020. Future work will combine these test results with additional sources of data to identify participants' COVID-19 infection and vaccination status. These ALSPAC COVID-19 serology data are being complemented with linkage to health records and Public Health England pillar testing results as they become available, in addition to four previous questionnaire waves and a prior antibody test. Data have been released as an update to the previous COVID-19 datasets. These comprise: 1) a standard dataset containing all participant responses to all four previous questionnaires with key sociodemographic factors; and 2) individual participant-specific release files enabling bespoke research across all areas supported by the study. This data note describes the second ALSPAC antibody test and the data obtained from it. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Data availability - This is part of a series of cohort serology data sets that were generated as a result of NCS activity. These are described in the publication: https://elifesciences.org/articles/80428 |
| URL | https://wellcomeopenresearch.org/articles/6-283 |
| Title | The Avon Longitudinal Study of Parents and Children - A resource for COVID-19 research: Questionnaire data capture November 2020 - March 2021 |
| Description | The Avon Longitudinal Study of Parents and Children (ALSPAC) is a prospective population-based cohort study which recruited pregnant women in 1990-1992 and has followed these women, their partners (Generation 0; G0) and their offspring (Generation 1; G1) ever since. The study has reacted rapidly and repeatedly to the coronavirus disease 2019 (COVID-19) pandemic, deploying online questionnaires throughout the pandemic. In November/December 2020, a fourth questionnaire was deployed asking about physical and mental health, lifestyle and behaviours, employment and finances. G0 participants were offered an online questionnaire between 17th November 2020 and 7th February 2021, while G1 participants were offered both online and paper questionnaires between 1st December 2020 and 19th March 2021. Of 15,844 invitations, 8,643 (55%) participants returned the questionnaire (3,101 original mothers [mean age 58.6 years], 1,172 original fathers/partners [mean age 61.5 years] and 4,370 offspring [mean age 28.4 years]). Of these 8,643 participants, 2,012 (23%) had not returned a previous COVID-19 questionnaire, while 3,575 (41%) had returned all three previous questionnaires. In this questionnaire, 300 participants (3.5%) reported a previous positive COVID-19 test, 110 (1.3%) had been told by a doctor they likely had COVID-19, and 759 (8.8%) suspected that they had had COVID-19. Based on self-reported symptoms, between October 2020 and February 2021 359 participants (4.2%) were predicted COVID-19 cases. COVID data is being complemented with linkage to health records and Public Health England pillar testing results as they become available. Data has been released as an update to the previous COVID-19 datasets. It comprises: 1) a standard dataset containing all participant responses to both questionnaires with key sociodemographic factors; and 2) as a composite release coordinating data from the existing resource, thus enabling bespoke research across all areas supported by the study. This data note describes the fourth questionnaire and the data obtained from it. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This a specific questionnaire which was deployed to assess long COVID in LPS and is one of a series of linked cohort collections described here: https://www.nature.com/articles/s41467-022-30836-0 |
| URL | https://wellcomeopenresearch.org/articles/6-155 |
| Title | TwinsUK |
| Description | The TwinsUK resource is the biggest UK adult twin registry of 12.000 twins used to study the genetic and environmental aetiology of age related complex traits and diseases. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | https://twinsuk.ac.uk/media-and-engagement/overview/ |
| URL | http://service.re3data.org/repository/r3d100011851 |
| Title | UK LLC Environmental and geospatial modelling data outputs |
| Description | The Centre for Environmental Health and Sustainability (CEHS), University of Leicester (UoL), is developing exposure data on air quality, environmental noise (road traffic), and greenspace to be integrated with cohorts via the LLC. CEHS is also providing support to the LLC on geocoding addresses, to update address databases in selected cohorts and enhance the linkage. Air quality: the LLC has access to air quality maps for nitrogen dioxide (NO2), fine particles (PM2.5) and ozone (O3). The maps cover Great Britain at 25m resolution and provide annual average concentrations for each year in the period 2010-2019. Work is being finalised to calibrate the maps for years covering the COVID-19 pandemic (2020, 2021) Environmental noise: LLC benefits from a noise modelling system developed by CEHS that includes a bespoke national-scale traffic model to provide a higher density of source emissions than available via the END or UK Government. The CEHS noise model is based on the CNOSSOS (Common Noise Assessment Methods) methodology and runs on the UoL high performance computer. For the LLC, CEHS have established a modelling domain and spatial databases (source emissions and propagation) covering ~95% of the UK Greenspace: via satellite imagery for greenspace analysis for the whole of the UK, including a description of where to obtain data and how to process the imagery. The aim being to provide layers for meaningful comparison with specific address locational information obtained from the cohorts in the LLC. In this way, cohort members can be tracked over time (decades) and their proximity to greenspace explored. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | No |
| Impact | The modelling of environmental exposures are well developed. Linkage to UK LLC participants via model output assignment is imminent. Once complete this data will transferred to the UK LLC Trusted Research Environment (TRE) where it will be made available to approved research data users. |
| Title | UK LLC Resource Dataset - CORE NHS D indicator and presence files |
| Description | This consists of a couple of tables: NHS D presence table: UK LLC derived tables that contain counts of times participants appear in each NHS D dataset along with a 'last seen' data to indicate when they last visited that setting. NHS D source indicator: contains ethnicity, sex and encrypted LSOA. These are derived from a pooled dataset of all NHS D sources and the table contains the origin/source. This is one row per person and the origin is selected based on a hierarchy. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- 1958 National Child Development Study (NCDS) Covid19-Relevant Data |
| Description | This research dataset is comprised of NCDS58-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- 1970 British Cohort Study (BCS70) Covid19-Relevant Data |
| Description | This research dataset is comprised of BCS70-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Avon Longitudinal Study of Parents and Children (ALSPAC) Covid19-Relevant Data |
| Description | This research dataset is comprised of ALSPAC-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Born in Bradford (BIB) Covid19-Relevant Data |
| Description | This research dataset is comprised of BIB-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- English Longitudinal Study of Ageing (ELSA) Covid19-Relevant Data |
| Description | This research dataset is comprised of BIB-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Extended Cohort for E-health, Environment and DNA (EXCEED) Covid19-Relevant Data |
| Description | This research dataset is comprised of EXCEED-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Generation Scotland Covid19-Relevant Data |
| Description | This research dataset is comprised of Generation Scotland-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Generation Scotland NHS & Registries Data |
| Description | This research dataset is comprised of NHS and Registries data for Generation Scotland participants. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC. UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Genetic Links to Anxiety and Depression Study (GLAD) Covid19-Relevant Data |
| Description | This research dataset is comprised of GLAD-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- MRC National Survey of Health and Development Cohort/1946 Birth Cohort (NSHD/1946BC) Covid19-Relevant Data |
| Description | This research dataset is comprised of NSHD/1946BC-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Millennium Cohort Study (MCS) Covid19-Relevant Data |
| Description | This research dataset is comprised of MCS-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- NHS Digital Covid Testing and Vaccination Data |
| Description | This research dataset is comprised of NHS Digital sourced Covid Testing and Vaccination data. The UK LLC worked with NHS Digital, to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC. Data are de-identified (by NHS Digital), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to NHS Digital's documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- NHS Digital GP data |
| Description | This research dataset is comprised of NHS Digital sourced GP data. The UK LLC worked with NHS Digital, to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC. Data are de-identified (by NHS Digital), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to NHS Digital's documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- NHS Digital Hospital Episode Statistics (HES) |
| Description | This research dataset is comprised of NHS Digital sourced Hospital Episode Statistics data. The UK LLC worked with NHS Digital, to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC. Data are de-identified (by NHS Digital), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to NHS Digital's documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- NHS Digital Mental Health Services Data |
| Description | This research dataset is comprised of NHS Digital sourced Mental Health Services Data. The UK LLC worked with NHS Digital, to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC. Data are de-identified (by NHS Digital), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to NHS Digital's documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- NHS Digital Registration Data |
| Description | This research dataset is comprised of Registration data, including Cancer Registration, Civil Registration-Deaths, and Demographics data. The UK LLC worked with NHS Digital, to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC. Data are de-identified (by NHS Digital), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to NHS Digital's documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- National Institute of Health Research (NIHR) BioResource COVID-19 Psychiatry and Neurological Genetics (COPING) Study |
| Description | This research dataset is comprised of NIHR Bioresource-collected de-identified data from the COPING Study. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Next Steps Covid19-Relevant Data |
| Description | This research dataset is comprised of Next Steps-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA) Covid19-Relevant Data |
| Description | This research dataset is comprised of NICOLA-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Southall and Brent Revisited (SABRE) Covid19-Relevant Data |
| Description | This research dataset is comprised of SABRE-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- TRACK-COVID Study Covid19-Relevant Data |
| Description | This research dataset is comprised of TRACK-COVID-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- The European Prospective Investigation into Cancer (EPIC Norfolk) Covid19-Relevant Data |
| Description | This research dataset is comprised of EPIC Norfolk-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- The Fenland Study (FENLAND) Covid19-Relevant Data |
| Description | This research dataset is comprised of FENLAND-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- TwinsUK Covid19-Relevant Data |
| Description | This research dataset is comprised of TwinsUK-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Resource Dataset- Understanding Society - UK Household Longitudinal Study (UKHLS) Covid19-Relevant Data |
| Description | This research dataset is comprised of UKHLS-collected de-identified data. The UK LLC worked with the study and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups), to develop the appropriate governance materials and permissions to enable this data to be shared with UK LLC UK LLC staff worked with the UK LLC 'vanguard group' of contributing LPS to specify, onboard and flow data from the study, into the TRE. Data are de-identified (by the study), processed and provisioned (by UK LLC) to approved researchers. The UK LLC Data Request Form provides useful information and links to the study's website and documentation for the dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | These data are integrated into the UK LLC. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. Research from projects using these data from the LHW NCS and other National Core Studies is ongoing. |
| URL | https://ukllc.ac.uk/ |
| Title | UK Longitudinal Linkage Collaboration |
| Description | UK Longitudinal Linkage Collaboration (UK LLC) is a centralised infrastructure service for data linkage for longitudinal population studies (LPS) and a pan-UK, interdisciplinary, Trusted Research Environment (TRE) for the secure, pooled, analysis of diverse LPS data. This global first provides a national research capability for academia, policy makers and industry. UK LLC has combined data from >20 LPS with >200,000 participants. Participants' data have been linked to NHS records (primary, secondary, community care; COVID-19; civic registers; prescriptions; mental health) and geo-coded environmental exposures (pollution, green space, neighbourhood indicators). UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. UK LLC has support from >20 major UK interdisciplinary studies spanning 75 years of follow-up. These studies include many flagship MRC/Wellcome Trust studies and the ESRC priority investments: Avon Longitudinal Study of Parents and Children, ALSPAC; Born in Bradford, BiB; Centre for Longitudinal Studies (inc. National Child Development Survey NCDS58, British Cohort Study BCS70, Millennium Cohort Study MCS, Next Steps); COMPARE; English Longitudinal Study of Ageing, ELSA; European Prospective Investigation of Cancer, Epic-Norfolk; Extended Cohort for E-health, Environment and DNA, EXCEED; Fenland; Generation Scotland; Genetic Links to Anxiety and Depression, GLAD; INTERVAL; National Study of Health and Development, NHSD46; NIHR Bioresources, including STRIDES and COPING; Northern Ireland Cohort of Longitudinal Study of Ageing, NICOLA; Southall and Brent Revisited, SABRE; Track-COVID; Twins Early Development Study, TEDS; Twins UK; UK Household Longitudinal Study, Understanding Society. The development of the UK LLC was informed by precedents from ALSPAC & Born in Bradford (through the MRC support Mental Health Pathfinder project); Generation Scotland; CLOSER (through the Data Linkage programme) and through Andy Boyd's secondment to ESRC to scope the potential for using population data for inclusive longitudinal research. The UK LLC concept was further informed through input from Data Managers from across our 'vanguard group' of contributing LPS and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. There are currently 11 approved projects using UK LLC from the LHW NCS and other National Core Studies. The research from these is ongoing. There are notable methodological outputs from the UK LLC which include: (1) a novel governance structure accommodating the needs of many (n=24) UK longitudinal studies and major data owners (Eg, NHS Digital) into a common framework; (2) novel enhancements to Secure eResearch Platform data science infrastructure (Swansea University) for their Trusted Third Party to act as a 'linkage broker' and manage participants from many studies into one data processing pipeline; (3) novel enhancements to Secure eResearch Platform data science infrastructure (Swansea University) to 'record link' participants from many studies into one pooled 'super cohort' accounting for complex overlap between study membership and shared residence (ie, where participants are members of multiple studies, where occupants of a single residence are in one or more studies); (4) a transformational data pipeline to extract records of study participants from across NHS Digital records accounting for different legal bases and changes in permissions over time; (5) a novel data access process enabling a single point of application to request access to data from 24 LPS with linked records. |
| URL | https://ukllc.ac.uk/ |
| Description | BRADFORD TEACHING HOSPITALS NHS FOUNDATION TRUST |
| Organisation | Bradford Teaching Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | Bristol University-NCS LH&W |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Providing co-leadership of the project. Providing study data. Contributing to data analysis, results dissemination, study design and conduct, oversight and strategic input. |
| Collaborator Contribution | Professor Jonathan Sterne, is co-Director of the LH&W NCS and PI of the vaccination theme related to this award. Providing co-leadership of the project. Providing study data. Contributing to data analysis, results dissemination, study design and conduct, oversight and strategic input. |
| Impact | doi: https://doi.org/10.1101/2021.11.22.21266512 |
| Start Year | 2020 |
| Description | British Heart Foundation-HDR UK National Cardiovascular Data Science Centre |
| Organisation | British Heart Foundation (BHF) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | As member of Scientific Steering Group gave invited talk at workshop (phenomics) and advised on priorities |
| Collaborator Contribution | £10M |
| Impact | Academic, research and clinical outputs |
| Start Year | 2019 |
| 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 | Collaboration with University of Aberdeen, Swansea University and LSHTM |
| Organisation | University of Aberdeen |
| Department | Institute of Applied Health Sciences |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contributing data from Wales |
| Collaborator Contribution | Contributing data and researcher time from Scotland and England |
| Impact | None to date |
| Start Year | 2022 |
| Description | Data & Connectivity National Core Study (Health Data Research UK, Administrative Data Research UK, ONS) |
| Organisation | Administrative Data Research Network |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Uk LLC work closely with HDRUK via the UKLLC/Data & Connectivity 'interlock'. Through this the groups share insights and challenges: with UK LLC escalating 'shared challenges' to HDR UK attention (e.g. the need across Uk data science infrastructure to integrate health records across devolved boundaries) and to provide test-bed environment to resolve challenges. UK LLC provides insights to other HDRUK groups - eg the Outbrake Data Analysis Platform (ODAPP) on governance structures and TRE design. Andy Boyd sits on HDR UK review panels, advisory meetings and is contributing to the design of the HDRUK QQ2 application. |
| Collaborator Contribution | HDRUK provide advice on TRE design and provision of NHS data. The HDRUK Data & Connectivity forum provides an opportunity for networking and lobbying. HDRUK experts (eg David Seymour |
| Impact | Supported UK LLC developing a wide collaborative network and formed a platform to help ensure NHS in England prioritised UK LLC development during the pandemic response. Led to UK LLC input into design of TRE models and also to the Population Research UK scoping study. Conveened a long-term relationship with the PROTECT National Core Study for wider collaboration. |
| Start Year | 2020 |
| Description | Data & Connectivity National Core Study (Health Data Research UK, Administrative Data Research UK, ONS) |
| Organisation | Health Data Research UK |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Uk LLC work closely with HDRUK via the UKLLC/Data & Connectivity 'interlock'. Through this the groups share insights and challenges: with UK LLC escalating 'shared challenges' to HDR UK attention (e.g. the need across Uk data science infrastructure to integrate health records across devolved boundaries) and to provide test-bed environment to resolve challenges. UK LLC provides insights to other HDRUK groups - eg the Outbrake Data Analysis Platform (ODAPP) on governance structures and TRE design. Andy Boyd sits on HDR UK review panels, advisory meetings and is contributing to the design of the HDRUK QQ2 application. |
| Collaborator Contribution | HDRUK provide advice on TRE design and provision of NHS data. The HDRUK Data & Connectivity forum provides an opportunity for networking and lobbying. HDRUK experts (eg David Seymour |
| Impact | Supported UK LLC developing a wide collaborative network and formed a platform to help ensure NHS in England prioritised UK LLC development during the pandemic response. Led to UK LLC input into design of TRE models and also to the Population Research UK scoping study. Conveened a long-term relationship with the PROTECT National Core Study for wider collaboration. |
| Start Year | 2020 |
| Description | Data & Connectivity National Core Study (Health Data Research UK, Administrative Data Research UK, ONS) |
| Organisation | Office for National Statistics |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Uk LLC work closely with HDRUK via the UKLLC/Data & Connectivity 'interlock'. Through this the groups share insights and challenges: with UK LLC escalating 'shared challenges' to HDR UK attention (e.g. the need across Uk data science infrastructure to integrate health records across devolved boundaries) and to provide test-bed environment to resolve challenges. UK LLC provides insights to other HDRUK groups - eg the Outbrake Data Analysis Platform (ODAPP) on governance structures and TRE design. Andy Boyd sits on HDR UK review panels, advisory meetings and is contributing to the design of the HDRUK QQ2 application. |
| Collaborator Contribution | HDRUK provide advice on TRE design and provision of NHS data. The HDRUK Data & Connectivity forum provides an opportunity for networking and lobbying. HDRUK experts (eg David Seymour |
| Impact | Supported UK LLC developing a wide collaborative network and formed a platform to help ensure NHS in England prioritised UK LLC development during the pandemic response. Led to UK LLC input into design of TRE models and also to the Population Research UK scoping study. Conveened a long-term relationship with the PROTECT National Core Study for wider collaboration. |
| Start Year | 2020 |
| 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 | Dynamic Resilience LEAP network of performers working on geroscience |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Target objectives and demonstration To identify sources of resilience to protect our ageing population, we need longitudinal experimental evidence on modifiable resilience factors. This will enable us to understand what interventions to make and when to implement them. The COVID-19 pandemic afforded a unique and relatively time-bound natural experiment to test the impact of known and putative resilience pathways on a set of clearly defined clinical and functional endpoints. Study of COVID-related stressors, including infection and social isolation, is enabled by our deeply-phenotyped existing ageing twin cohort, TwinsUK. This abstract sets forth the potential to be garnered from use of the 30-years of pre-pandemic data and intensive data and biological samples collected across the COVID-19 pandemic within this cohort. Our first target objective is to provide understanding of how three recently proposed ageing hallmarks (inflammation, microbiome disturbance, splicing dysregulation), canonical hallmarks (epigenetic alterations, telomere shortening), and altered metabolism interact to influence dynamic resilience in the context of pandemic stressors in individuals without the confounding effect of genetic and early life variation. We focus specific resources on age-related epigenetic changes, splicing modifications, and gut dysbiosis, which most likely confer both mechanistic understanding of the development of vulnerability to stressors and novel intervention targets. At present, however, the links between these hallmarks and functional and clinical outcomes remain uncertain. Using our longitudinally phenotyped cohort we will relate these processes to changes in metabolism, inflammation, physiology and whole system functioning. Our second target objective is to enrich the Dynamic Resilience research community with our extensively characterised ageing twin data. This will allow interrogation of other hallmarks of ageing and replication of findings from other contexts, (e.g. acute changes related to different stressors in specific patient groups, such as cancer / surgery) and foster collaborations. We have existing, funded data- and sample-sharing mechanisms with an exemplary track record, underpinned by broad ethics and consent from our highly engaged participants. Our group is directly involved in interventional research in both inpatient and community settings, which will facilitate translation of findings. |
| Collaborator Contribution | Other research partners in the Dynamic Resilience network are working on similar questions in different cohorts - see here : https://wellcomeleap.org/dr/ |
| Impact | first outputs awaited |
| Start Year | 2023 |
| 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 | KCL |
| Organisation | King's College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | LSHTM |
| Organisation | London School of Hygiene and Tropical Medicine (LSHTM) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | Longitudinal Health and Wellbeing |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The UK LLC is a central resource for researchers across the Longitudinal Health and Wellbeing (LH&W) Programme, to address a range of questions central to the national Core Studies Programme where pooled and linked longitudinal study data are needed. The UK LLC has enabled the sharing of information across the studies and uniquely provisioned this through one easy access route to the analysts associated with LH&W. |
| Collaborator Contribution | UCL partners are the key liaison with funders and co-ordinators of the wider LH&W programme. The analysts within UCL formed the key group representing the beta users of the system. Some of the studies based in UCL formed the original 'UK LLC think-tank' or Vanguard. UCL LHW members sit on UK LLC Executive. |
| Impact | * Development of UK LLC funded through LH&W NCS * LH&W analysts early adopters of UK LLC and co-developing UK LLC processes * LH&W Executive members are supporting the UK LLC partnership beyond LH&W * LH&W led to wider collaborations including with HDR UK & ONS Data & Connectivity NCS, with Health and Safety Executive and with OpenSAFELY - these are leading to grant funding and scientific applications |
| Start Year | 2020 |
| 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_0003: The mental health and wellbeing consequences of contracting COVID19 (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 | 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. |
| Impact | 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. |
| Start Year | 2021 |
| 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 | Swansea University |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | UK LLC & HDRUK Outbreak Data Analysis Platform Partnership (ODAPP) |
| Organisation | Health Data Research UK |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | UK LLC are providing knowledge exchange (primarily governance advice and materials) to the ODAPP in order to help efficiently develop their TRE. This will host COVID-19 datasets from the D&C NCS (ISARIC 4C/CO-CIN data, GenOMICC data). Robin Flaig, UK LLC Co-Director, will be seconded to ODAPP part-time to transfer learning from UK LLC Data Access Committee to the ODAPP in order to establish their Data Access Committee. |
| Collaborator Contribution | HDRUK are leading the development of the ODAPP via the project team based at University of Edinburgh. Involvement of UK LLC in ODAPP provides the basis for mutual learning and feedback to develop UK LLC systems. |
| Impact | RF Secondment Input into strategic development of ODAPP governance framework through AB & RF attendance at ODAPP platform steering group. |
| Start Year | 2022 |
| 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 |
| Description | University of Cambridge |
| Organisation | University of Cambridge |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | University of Edinburgh |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | University of Glasgow |
| Organisation | University of Glasgow |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | University of Leicester |
| Organisation | University of Leicester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | University of Oxford |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | University of Ulster |
| Organisation | Ulster University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | N/A yet |
| Collaborator Contribution | N/A yet |
| Impact | N/A yet |
| Start Year | 2022 |
| Title | Masking address generator |
| Description | The software creates a series of random/fake address pulled from the OS AddressBase+ database. The idea is that studies that collect address data can have masking address generated maintaining a distribution that is realistic. When de-coupled from other identifiers the list of real+fake address can be shared maintaining a high degree of confidentially, allowing external parties to model and add data e.g. air pollution measures to study participants datasets. The user supplies the program with a definitions input file where they can define: 1) geocoordinate centres (important for geographically constrained studies) 2) A search radius 3) Start year 4) Number of individuals to create fake addresses for 5) Whether to include full address or postcode only The software uses the OS AddressBase+ database which includes every residential address in the UK. It then searches for addresses (randomly) using search criteria. it will then assign start and end dates to the addresses (randomly) although maintaining a realistic distribution as per the study definition information. The program will also added dirtyness (commonly mistyped chars/digits) to the postcode field. This is done so that when joined to a list of real addresses there is a degree of error consistent with reality. |
| Type Of Technology | Software |
| Year Produced | 2021 |
| Impact | This software was used directly by the creators to respond to a need to create masking addresses based on existing address distributions |
| 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 R data extraction and labelling helper |
| Description | The program consists of 2 R scripts a "helper" and "functions". The latter providing functions to the former for extracting data from the database and applying metadata (value and variable) labelling via the expss package. |
| Type Of Technology | Software |
| Year Produced | 2022 |
| Impact | The impact of this will mean that research data users in the UK LLC TRE will have a headstart on fetching data for their project. As well as having pre-scripted metadata labelling this speeding up their transition from data setup to analyses. |
| Title | UK LLC data processing pipeline |
| Description | The UK LLC receives data from over 20 studies from the LPS community as well as linked records from NHS D. The receipt and upload of data to the UK LLC database is performed by the Population Data Science development team at Swansea University (SU) and Managed by the UK LLC team at the University of Bristol (UoB). The database sits within the UK LLC's Secure eResearch Platform (SeRP UK). This is a Trusted Research Environment (TRE) enabling research data users a safe a secure method to access and analyse data approved as part of their project. When data arrives in the database the UK LLC team are required to check the data is expected and any cleaning and data harmonisation tasks are performed. This is done to enable data provisioning to research data users in an efficient manner maintaining data integrity. The data processing pipeline is a modular system directed by a single controlling script to transform data that arrives in the database to a state that can be presented to UK LLC research data users, and to thoroughly document all data in the database. Each subprocess is addressed in its own script. Subprocesses are run sequentially in a required order. Each modules is written in python with embedded T-SQL to enable inaction with the UK LLC database. The subprocess cover the following broad actions: 1) Check contents of database and creates initial data asset register 2) Harmonise metadata column names in meta data tables (variable and value labels) and merge meta data tables where necessary 3) Rename tables where tables do not follow table naming conventions as per UK LLC file guidance. This process includes a manual review that the suggestions are correct. 4) Harmonising metadata (value and variable labels) cell values so their fields and values match with the master data tables and are thus linkable 5) Creation of master lookup tables/views for all value and variable label metadata 6) Re-check contents of database and creates final (but pre-disclosure risk assessment) data asset register |
| Type Of Technology | Software |
| Year Produced | 2022 |
| Impact | The data processing pipeline allows data from 20 longitudinal population studies and linked data from NHS D to be consistently harmonised before being provisioned to research data users with the TRE. Without this data processing software an efficient and scalable data provisioning process would not be possible. |
| Title | UK LLC data provisioning pipeline |
| Description | The UK LLC data provisioning pipeline (python) takes a research user defined request for data and creates a series of project-specific SQL views. The views are the data representation of the user request. The user request has 2 inputs. Firstly a list of the data tables required, these are datasets selectable from approx. 20 longitudinal population studies. Secondly, for selection of NHS D data this is done at the row level using medical code lists for data where this is practicable. Both of these selection steps allow data minimisation so research data users are provide only with data which is pertinent to the research question. The process also creates a set of project specific IDs and matches these to all datasets at the individual-level. This is an extra control so that data cannot be joined between projects in the TRE. |
| Type Of Technology | Software |
| Year Produced | 2022 |
| Impact | The provisioning pipeline has allowed data to flow to numerous researcher projects within the SeRP TRE maintaining the UK LLC's principles of data minimisation. The pipeline is also extremely efficient and requires minimal manual data processing. This was a design choice to enable future scalability and to minimise risk of user error. |
| 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 | UK LLC file checker |
| Description | The File checker is a user tool to help longitudinal population study data managers bring their file submissions in line with the requirements set out in "UK Longitudinal Linkage Collaboration: Guidance for Depositing Data into the UK LLC". The checker conducts several automated checks on the file name, file formatting and file contents where appropriate. |
| Type Of Technology | Software |
| Year Produced | 2021 |
| Impact | This roll out of the file checker at the studies participating in the UK LLC has enabled a smoother flow of data into the SeRP TRE. As the SeRP processing is expecting a pre-defined data format. It is more efficient to catch any deviation from the data spec before data arrives at the SeRP. |
| URL | https://github.com/UKLLC/File-Checker |
| Title | UK LLC python jupyter notebook helper |
| Description | This software consists of 2 parts, a python "notebook_helper.py" script this contains a helper class with a variety of functions which can be used with the second part, the jupyter notebook itself. The jupyter notebook has pre-pared code to access and analyse data contained within a users working space in the SeRP TRE. It deals with fetching of data and associated metadata and gives examples of how to display this with the notebook. |
| Type Of Technology | Software |
| Year Produced | 2022 |
| Impact | The impact of this will mean that research data users in the UK LLC TRE will have a headstart on fetching data for their project. As well as a series of convenient functions to perform some initial analyse of their data. |
| Title | UK LLC stata data extraction and labelling helper |
| Description | This program is written in python and stata using the pystata python package for interoperability. The program extracts all approved database views for a project, saves local versions to a users working area and applies value and variable labelling where available. |
| Type Of Technology | Software |
| Year Produced | 2022 |
| Impact | The impact of this will mean that research data users in the UK LLC TRE will have a headstart on fetching data for their project. As well as having pre-scripted metadata labelling this speeding up their transition from data setup to analyses. |
| Description | A Karthikeyan Suseeladevi Presentation at Royal Statistical Society 2022 International Conference - Sep 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Arun Karthikeyan Suseeladevi presented 'Impact of varying sampling fraction on estimate precision and computational efficiency in national linked electronic health record databases' at Royal Statistical Society 2022 International Conference. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://virtual.oxfordabstracts.com/#/event/2726/submission/152 |
| Description | ADR England Data Linkage Steering Group. Administrative Data Research UK |
| 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 | Contributed to advisory body |
| Year(s) Of Engagement Activity | 2021 |
| Description | ADR UK England Data Linkage Steering 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 | Contributed guidance on TREs, governance and record linkage insights to the ADR UK data linkage steering group. |
| Year(s) Of Engagement Activity | 2022 |
| Description | ADR UK England Data Linkage Steering 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 | Contributed guidance on TREs, governance and record linkage insights to the ADR UK data linkage steering group. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | ARMA Webinar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | 4 members of UK LLC attended the ARMA webinar on ethical review and approvals. |
| Year(s) Of Engagement Activity | 2012,2023 |
| Description | Academic 1pm, Health Analysis and Pandemic Insights (HAPI), Office for National Statistics |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk on the serology work carried out as part of the MRC secondment. This sparked discussion and further research questions. There was an invitation to come back and present again, once the new research analysis has been carried out. |
| 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 | 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 | Article for Royal Statistical Society |
| 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 | Professional Practitioners |
| Results and Impact | Covid lockdowns in the UK: Estimating their effects on transmission |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://rss.onlinelibrary.wiley.com/doi/full/10.1111/1740-9713.01628?fbclid=IwAR0UwwjmyltHrpJrDqxA1j... |
| Description | Attended "The health of the public approach: working across disciplines and sectors to tackle health challenges" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Deputy director attended "The health of the public approach: working across disciplines and sectors to tackle health challenges" in Edinburgh. This sparked questions afterwards for improvements going forward. |
| 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 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 | B Zheng Oral and poster presentations at the ICPE International 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 | See abstract book - number 199 |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://onlinelibrary.wiley.com/doi/10.1002/pds.5518?mi=49buyt&af=R&AllField=seminars+dialysis&conte... |
| 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 "Developing the UK LLC Data Access Process" |
| 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 Research Manger produced a blog on Developing the UK LLC Data Access Process. This was shared on UK LLC Social Media channels such as Twitter and LinkedIn where high level of engagement was received. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukllc.ac.uk/blog/2022/04/22/developing-the-uk-llc-data-access-process.html |
| 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 | Blog on "Prioritising information security at the UK LLC" |
| 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 Governance and Policy Manager produced a blog on Prioritising information security at the UK LLC. This was shared on UK LLC Social Media channels such as Twitter and LinkedIn where high level of engagement was received. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukllc.ac.uk/blog/2022/05/23/prioritising-information-security-at-the-uk-llc.html |
| Description | Blog on "The UK LLC Origin Story" |
| 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 Deputy Director produced a blog on Developing the UK LLC Origin Story. This was shared on UK LLC Social Media channels such as Twitter and LinkedIn where high level of engagement was received. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukllc.ac.uk/blog/2022/04/01/the-uk-llc-origin-story.html |
| Description | Blog propduced for CLOSER UK on "Launching an important piece of UK research infrastructure: The UK Longitudinal Linkage Collaboration" |
| 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 Deputy Director produced a blog for CLOSER UK on Launching an important piece of UK research infrastructure: The UK Longitudinal Linkage Collaboration. This was shared on UK LLC and CLOSER UK Social Media channels such as Twitter and LinkedIn where high level of engagement was received. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukllc.ac.uk/blog/2022/04/06/launching-an-important-piece-of-uk-research-infrastructure-the-u... |
| Description | Blog: Wellcome Longitudinal Population Studies COVID-19 Questionnaire Secretariat - one year on and what's next. |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | A reflection on one year of the The Wellcome Longitudinal Population Studies COVID-19 Questionnaire, which engaged with 13 diverse cohorts , was made readily and freely available, was used in whole or part by more than 100 studies and got more than 31,000 responses. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://blogs.ucl.ac.uk/covid19-lhw/2021/07/19/the-wellcome-longitudinal-population-studies-covid-19... |
| Description | Blog: Understanding the long-term impact of the COVID-19 pandemic on health and wellbeing |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | This blog 'Understanding the long-term impact of the COVID-19 pandemic on health and wellbeing' gives an overview of the study structure and aims of the COVID-19 Longitudinal Health and Wellbeing National Core Study and the CONVALESCENCE Long COVID study. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://blogs.ucl.ac.uk/covid19-lhw/2021/07/08/understanding-the-long-term-impact-of-the-covid-19-pa... |
| Description | Brand Development Relating to input for the UK Longitudinal Linkage Collaboration Animation |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Formal working groups helped develop the first UK LLC animation in 2021. This including in put from collaborating studies, members of the public, Longitudinal Health and Well-being Team, and the UK LLC Team. Individuals fed into all parts of this animation, from the initial scripts, to the graphics used and the voice over. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://ukllc.ac.uk/the-public/ |
| 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 & UK LLC NHS Digital 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 | CLOSER & UK LLC organised a workshop with NHS Digital and data managers from the UK LPS community in order to discuss record linkage applications, emerging TRE ways of working, and to discuss barriers to data sharing with the NHS. The workshop included presentations from NHS Digital on how their process works, updates on moves to TRE data use and also on how NHS D & the LPS can address shortcomings in the application and data sharing process. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.closer.ac.uk/event/nhs-digital-workshop/ |
| Description | CLOSER - Preparing for the future III |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Longitudinal population studies (LPS) currently face a range of challenges. With the world still dealing with COVID-19 and its far-reaching impacts, the value of longitudinal studies, with the wealth of data already collected in the years before the pandemic, and their ability to track individuals during and after the pandemic, has never been greater. But what will these studies look like in a post-COVID world? How will the experiences during the pandemic influence approaches to policy engagement and impact, the adoption of novel approaches to data collection and emerging technologies, and to participant and public engagement? How are studies harnessing the opportunities that have arisen during the pandemic and what learning has been gained? Following the success of CLOSER's 2018 and 2020 Preparing for the future conferences, in January 2022 we brought the LPS community together again to identify ways to tackle shared challenges. This online conference, delivered over three days, was a collaborative, interactive event with a strong focus on sharing best practice and problem solving. The programme was shaped by consultation with UK and international longitudinal studies. Each session involved short presentations of exemplar work in a given area, followed by facilitated group discussions and the chance for delegates to share their own experiences. The conference addressed the following topics: The impact of COVID-19 on longitudinal population studies Influencing policy Data linkage New forms of data collection Participant and public engagement Influencing policy Partnerships facilitate policy translation - a case study from Growing Up in New Zealand -Susan Morton, Growing Up in New Zealand Watch the talk | Download the slides [PDF] | View the illustrated summary [JPG] Generating policy impact: insights from Understanding Society Policy and Partnerships Unit - Raj Patel, Understanding Society Watch the talk | Download the slides [PDF] | View the illustrated summary [JPG] |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.closer.ac.uk/event/2022-conference/ |
| 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 LPS Conference |
| 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 (Co-Director UK LLC) gave a presentation giving a UK LLC Overview and explaining the innovations made and challenges faced |
| Year(s) Of Engagement Activity | 2022 |
| Description | CLOSER-UK Webinar on UK LLC |
| 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 | A STEP-BY-STEP GUIDE TO APPLYING AND ACCESSING LINKED DATA IN THE UK LLC TRUSTED RESEARCH ENVIRONMENT. The program was as follows: PROGRAMME: (not necessarily in this order, still tbc) Introduction - Robin Flaig The Application Process - Stela McLachlan, Research Manager Data Access Public Review Panel - Kirsteen Campbell, Communications and Engagement Officer Break for Questions Making Data Requests - Sammy Berman, Data Manager Legal Documentation Requirements - Jacqui Oakley, Senior Research Manager Data Provision - Rich Thomas, Senior Data Manager Break for Questions Conclusions - Robin Flaig Researchers became aware of how to apply for and access data with the UK LLC. This resulted in researchers inquiring to access the UK LLC. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.youtube.com/c/CLOSER-UK/videos |
| Description | Chaired 4-nation Policy Roundtable on mental health |
| 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 | Policy Roundtable with representatives from all 4 -nations and various different government departments in each nation. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | Professional Practitioners |
| Results and Impact | Contributed governance and record linkage insights to the design of the DfE Children of the 2020s cohort study. |
| 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 | Children of the 2020s: Scientific Advisory Group. Department for Education |
| 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 as a scientific advisor with a focus on providing expertise on record linkages in longitudinal studies. |
| Year(s) Of Engagement Activity | 2021 |
| 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 | Continuation of Twitter Content |
| 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 | Social Media posts are scheduled, promoting the UK LLC as a resource for researchers to apply for access to linked data. Content receives high levels of engagement |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://twitter.com/UKLLCollab |
| Description | Convalescence presentation at the UK-US Long Covid Virtual Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Dr Dylan Williams and Dr Venexia Walker presented convalescence finding at the at the UK-US Long Coivd Virtual Meeting on Jun 28th. The aim of the meeting is to gather information from both UK and US Long Covid Studies ( NIH's RECOVER Initiative). The meeting was designed to discuss results, identify areas that would benefit further discussion, assess the need to share tools and identify research/data gaps. |
| Year(s) Of Engagement Activity | 2022 |
| Description | DATAMIND Industry Forum 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 presentation to the HDR UK DATAMIND Industry Forum describing the development of the UK LLC Trusted Research Environment and promoting the resource to industry users. |
| Year(s) Of Engagement Activity | 2022 |
| 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 Access Public Review Panel 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 | Members of the public meet to review project applications for linked data. |
| 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 | Data and Connectivity Turing Projects Presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Over 50 researchers, current and potential collaborators attended a talk by UK LLC Deputy Director which provided an overview of the UK LLC, the origins and data linkage within the resource. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Dialogue with a Public Contributor on Lay Summaries of Applications |
| 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 | Public contributors fed in a reviewed lay summaries from applications 10 - 24. This sparked questions and discussions around these applications being in the public interest, being written in lay English and including a public involvement plan. Afterwards, researchers amended their applications with recommendations from the panel. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Dialogue with a Public Contributor on Lay Summaries of Applications |
| 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 | Prior to setting up Public Involvement groups, the UK Longitudinal Linkage Collaboration had one Public Contributor who fed in and reviewed 9 lay summaries from 9 applications received up until December 2021. The reviews sparked discussions of how to make the applications more lay and to elaborate on public benefit of the research project. |
| Year(s) Of Engagement Activity | 2021 |
| Description | E Horne Presentation at HDR UK SouthWest Regional Meeting Sep 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Elsie Horne presented 'Estimating waning effectiveness of COVID-19 vaccines over six months since second dose: A cohort study using OpenSAFELY' at the HDR UK SouthWest Regional Meeting in Sep 2022. |
| Year(s) Of Engagement Activity | 2022 |
| Description | E Horne Presentation at Royal Statistical Society 2022 International Conference - Sep 22 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Elsie Horne presented 'Waning effectiveness of COVID-19 vaccines over six months since second dose: an OpenSAFELY cohort study using linked electronic health records' at Royal Statistical Society 2022 International Conference |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://virtual.oxfordabstracts.com/#/event/2726/submission/198 |
| 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 | Engagement with Patient Advisory Group |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | We presented our early findings on how avoidable, amenable, and preventable mortality has changed during the pandemic. Many patients had queries about what are the diseases that are considered amenable, preventable and avoidable and who decides on these. |
| 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 | Four Public Involvement Groups Finalised for the UK Longitudinal Linkage Collaboration |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Over 40 applications were received from a variety of groups - members of the public, ex professionals, current professionals/practitioners, study participants, patients and carers. Applications were reviewed and a number of applicants were invited for interviews with the UK Longitudinal Linkage Collaboration Senior Management Team in December 2021. Groups were finalised and agreed on in January 2022 and began contributing in various ways. |
| Year(s) Of Engagement Activity | 2021,2022 |
| 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 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 Consent 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 | UK LLC presentation to the HDR UK Consent 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 Public & Patient Involvement & Engagement Workshop on Data Minimisation |
| 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 | Emma Turner (UK LLC Senior Data Linkage Manager) - Presented to the HDR UK PPIE group and contributed to discussion on the topic of Data Minimisation in order for PPIE contributors to inform considerations of Trusted Research Environment governance policy to ensure minimisation strategies are legally compliant, supports efficient TRE access and management, permits new scientific opportunities and retains public support. |
| Year(s) Of Engagement Activity | 2022 |
| Description | HDR UK Southwest Regional Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Policymakers/politicians |
| Results and Impact | UK LLC presentation to the HDR UKL SW network describing the development of the UK LLC Trusted Research Environment and promoting the resource. |
| Year(s) Of Engagement Activity | 2022 |
| Description | HDR UK TRE Legal Toolkit Action Force Workshop |
| 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 | Contributed governance and record linkage insights to the design of a pan-UK legal toolkit for Trusted Research Environments |
| 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 COVID-19 National Core Studies Symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The virtual COVID-19 National Core Studies Symposium event presented progress on the COVID-19 National Core Studies Programme - a programme established by the UK Government, UKRI, NIHR and the Health and Safety Executive in October 2020 to accelerate the country's research response into COVID-19 by bringing together UK-wide expertise at pace and at scale. The study leaders, senior academics, policy makers and front-line research scientists who contributed to the online event addressed issues including future pandemic preparedness, vital research infrastructures, the importance of public engagement, the interface between science and society and the importance to demonstrate trustworthiness. The COVID-19 National Core Studies Symposium was attended by ~500 people from 26 countries, the symposium attracted patients, members of the public and colleagues from government, academia, industry, NHS, charities, and the media. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2021/07/COVID-19-National-Core-Studies-Summary-Report-14.... |
| 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 | HSE Domain Expert Interviews |
| 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 (UK LLC DIrector) chaired Domain Expert Interviews organised by the Thomas Ashton Institute to conduct a scoping of the data available to inform occupational health research and to inform HSE population data science policy. |
| Year(s) Of Engagement Activity | 2023 |
| 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 | Health Data Research UK - Data & Connectivity National Core Studies 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 | Andy Boyd (Director, UK LLC) & Robin Flaig (Co-Director, UK LLC) both regularly attend this meeting and have both given presentations providing updates on the UK LLC, lobbying for prioritisation of relevant UK data infrastructure enhancements and sharing practice and innovation developed by UK LLC. |
| Year(s) Of Engagement Activity | 2022 |
| 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 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | UK LLC presentation to the International Population Data Linkage Network describing the development of the UK LLC Trusted Research Environment and promoting the 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 | Invited Presentation - UK Longitudinal Linkage Collaboration. Longitudinal Area Network and Data-link (LAND) community of practice. UK: |
| 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 gave a presentation to the LAND group to describe the UK LLC and to detail its geo-spatial research potential and to gain feedback from this expert group for future functionality needs. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Invited Talk: BIHS 2021 Resilience in Research |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Chloe Park gave an Invited Talk at the Young Investigators session of the BIHS meeting, Brighton, Sep 2021, on Resilience in Research |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited to Present - UK Longitudinal Linkage Collaboration. Elizabeth Blackwell Institute Health Data Science Showcase |
| 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 (UK LLC Director) presented an update on the UK LLC to this NHS and academic group providing insights into the development of a national Trusted Research Environment in order to help inform the development of a TRE approach within the NHS Bristol, North Somerset and South Gloucestershire Clinical Commissioning Groups (BNSSG CCG) 'better care partnership' vision (being co-developed with HDR UK). This relationship contains aspirations to link local cohorts (ie, ALSPAC) into this TRE environment and also draws on insights from the development of the ALSPAC TRE through the MRC MH Pathfinder award which included linkage of the cohort to data from multiple NHS Trusts within the BNSSG CCG. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited to Present - UK Longitudinal Linkage Collaboration. UK Biobank workshop on social science and environmental health linkages |
| 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 presented to UK Biobank online workshop on developing non-health linkages within the UKBB cohort. This was based on progress made in this area by ALSPAC and UK Longitudinal Linkage Collaboration. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited to talk at Linkage of Administrative Records. UK Biobank Strategic Advisory Board. UK |
| 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 UK Biobank Scientific Advisory Board on the range of non-health administrative data which could be linked to the UKBB cohort and the scientific value of this, with a discussion on the legal/governance options and barriers/enablers to access. |
| Year(s) Of Engagement Activity | 2022 |
| Description | J Sterne (on behalf of A Boyd) Presentation at HDRUK SouthWest Regional Meeting Sep 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Jonathan Sterne presented 'The UK Longitudinal Linkage Collaboration: a trusted research environment for the longitudinal research community' on behalf of Andy Boyd at the HDRUK SouthWest Regional Meeting. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | K Taylor Presentation at Royal Statistical Society 2022 International Conference - Sep 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Kurt Taylor presented 'The risk of incidence diabetes following SARS-CoV-2 infection in unvaccinated and vaccinated populations: A cohort study of up to eighteen million people' at Royal Statistical Society 2022 International Conference. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://virtual.oxfordabstracts.com/#/event/2726/submission/189 |
| Description | LHSTM/OpenSAFELY Presentation of comparative effectiveness prescribing work to Expert Advisory Group/NHSE |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Presentation of our work on comparative effectiveness to the Expert Advisory Group/NHSE for input into the decision re NHS prescribing policy. |
| Year(s) Of Engagement Activity | 2022 |
| Description | LHW National Core Study - Joint EHR cohort leads meeting |
| 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 | Robin Flaig (Co-Director) attended this meeting to giver an overview and explain access. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Life History Research Society 2022 Symposium - Examining mental health inequalities during COVID-19 in the National Cohort Study - Longitudinal Health and Wellbeing programme: joint analysis across 12 longitudinal studies and electronic health records in the UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | The purpose was to disseminate findings at an international conference |
| Year(s) Of Engagement Activity | 2022 |
| Description | Life during the pandemic: evidence from five national cohorts |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Nuffield College Sociology Seminar; Invited seminar at Nuffield College University of Oxford |
| Year(s) Of Engagement Activity | 2022 |
| Description | Linked Data Review Panel 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 | Members of UK LLC and Vangard Team Members met to review applications to access linked data. |
| 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 | Longitudinal Health and Wellbeing NCS Symposium 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | A talk on the serology analysis which has recently been published "Antibody levels following vaccination against SARS-CoV-2: associations with post-vaccination infection and risk factors in two UK longitudinal studies"; other ongoing serology studies in the NCS; and future plans. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | Media Engagement with Sunday National |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | I spoke to a journalist from the Sunday National about the NHS pressures. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.thenational.scot/news/23121024.truth-scotlands-nhs-crisis-goes-back-coalition/ |
| Description | Media Engagement with the Financial Times |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | This was a one hour call where I spoke at length about how COVID-19 pandemic has affected healthcare services across the UK. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.ft.com/content/ee216e3e-2a3e-42f9-b6cb-8bd729e06898 |
| Description | Meet the Team Collaborator Addition on UK LLC Website |
| 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 | Wider collaborators of the UK LLC were added to the UK LLC Meet the Team section of the website |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukllc.ac.uk/meet-the-team/ |
| 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 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 | Mental health in six British cohorts: Recent findings and future direction |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited seminar, hosted by the ESRC Centre for Society and Mental Health, King's College London |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.kcl.ac.uk/events/mental-health-in-six-british-cohorts-recent-findings-and-future-directi... |
| 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 | NERC Digital Solutions programme-environmental determinants of health |
| 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 | Attended a workshop to explore opportunities to federate environmental exposure data from the NERC TRE to UK LLC and wider health focused TREs. |
| 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 | Oral presentation at Life History Research Society Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Oral presentation at Life History Research Society Conference: "Coming of Age in a Pandemic: Transitions to adulthood and young adult mental health". This talk was part of a symposium entitled "Examining mental health inequalities during COVID-19 in the National Cohort Study - Longitudinal Health and Wellbeing programme: Joint analysis across 12 longitudinal studies and electronic health records in the UK". Approx. 20 academics attended the talk and engaged in discussion about the work and the wider NCS afterwards. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://lifehistoryresearchsociety2020.com/ |
| Description | Our Future Health/UK LLC 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 | Meeting between UK LLC and Our Future Health to advise OFH on linkage strategy, consent form wording and routes to linking administrative non-health records. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Outbreak data analysis platform (ODAP) Meeting 5 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 Deputy Director delivered a talk to over 50 attendees which provided an overview of the UK LLC, the origins and data linkage within the resource. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Outbreak data analysis platform (ODAP) Workshop 6 June |
| 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 Deputy Director delivered a workshop to over 50 attendees which provided an overview of the UK LLC, the origins and data linkage within the resource. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | PROTECT NCS Symposium 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Presentation on the LHW NCS study as well as some key outputs of the NCS study, including recent research on serology data. The symposium had a broad audience of around 100 people. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://sites.manchester.ac.uk/covid19-national-project/our-events/protect-symposium-2022/ |
| Description | Population Research UK (PRUK): Programme Group. HDRUK |
| 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 | Provided specialist advice to panel to help shape the design and deliberations of the HDR UK scoping of Population Research UK. |
| Year(s) Of Engagement Activity | 2021 |
| 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 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 | Presentation: Annual Conference of the Society for Social Medicine 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual Conference of the Society for Social Medicine 2021 M Green: Mental health inequalities in disruptions to healthcare, economic activity and housing during COVID-19: findings from 12 UK longitudinal population surveys |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the European Public Health Association 2021: Health Behaviours and the UK furlough scheme: Evidence from Eight Longitudinal Population Surveys |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the European Public Health Association 2021: Workshop: Informing COVID-19 responses with longitudinal studies: demonstrating harmonised data infrastructure Chaired by SV Katikireddi & T Lallukka M Green: Health Behaviours and the UK furlough scheme: Evidence from Eight Longitudinal Population Surveys |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the European Public Health Association 2021: Health care disruption inequalities during Covid-19: Evidence from eleven longitudinal studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the European Public Health Association 2021: Workshop: Informing COVID-19 responses with longitudinal studies: demonstrating harmonised data infrastructure Chaired by SV Katikireddi & T Lallukka Included following 3 presentations: J Maddock: Health care disruption inequalities during Covid-19: Evidence from eleven longitudinal studies |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the European Public Health Association 2021: Mental health inequalities in disruptions across multiple domains during COVID -19: an investigation in 12 population-based longitudinal studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the European Public Health Association 2021: Workshop: Informing COVID-19 responses with longitudinal studies: demonstrating harmonised data infrastructure Chaired by SV Katikireddi & T Lallukka E McElroy: Mental health inequalities in disruptions across multiple domains during COVID -19: an investigation in 12 population-based longitudinal studies |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Inequalities in health care disruptions during Covid-19 in the UK: Evidence from eleven longitudinal studies. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Symposium: One question, a dozen studies: co-ordinated analyses of health inequalities during COVID-19 from multiple UK longitudinal surveys Chaired by P Patalay Included the following presentation: J Maddock: Inequalities in health care disruptions during Covid-19 in the UK: Evidence from eleven longitudinal studies. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Smoking, vaping, drinking and the UK furlough scheme: evidence from eight longitudinal population surveys |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Symposium: One question, a dozen studies: co-ordinated analyses of health inequalities during COVID-19 from multiple UK longitudinal surveys Chaired by P Patalay Included the following presentation: M Green: Smoking, vaping, drinking and the UK furlough scheme: evidence from eight longitudinal population surveys |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the Society for Longitudinal and Lifecourse Research 2021: The UK furlough scheme and diet, physical activity, and sleep during the COVID-19 pandemic in the UK: evidence from eight longitudinal studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Symposium: One question, a dozen studies: co-ordinated analyses of health inequalities during COVID-19 from multiple UK longitudinal surveys Chaired by P Patalay Included the following presentation: B Wielgoszewska: The UK furlough scheme and diet, physical activity, and sleep during the COVID-19 pandemic in the UK: evidence from eight longitudinal studies |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: CLOSER Conference 2022: Impact |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | C,park: Impact of the COVID-19 Longitudinal Health and Wellbeing National Core Study 2021: 18-01-2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation: CLOSER Conference 2022: Serology |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A.Wong presented an overview of the Serology work at the CLOSER conference on 19-1-2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation: MQ Mental Health Data Science Meeting: Mental Health findings from the LH&W NCS |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | MQ Mental Health Data Science Meeting: Mental Health findings from the LH&W NCS |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Mental health inequalities in healthcare, economic, and housing disruption during COVID -19: an investigation in 12 population-based longitudinal studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Symposium: One question, a dozen studies: co-ordinated analyses of health inequalities during COVID-19 from multiple UK longitudinal surveys Chaired by P Patalay Included the following presentation: J Maddock: Inequalities in health care disruptions during Covid-19 in the UK: Evidence from eleven longitudinal studies. |
| Year(s) Of Engagement Activity | 2021 |
| 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 | Press coverage for Antibody Levels following SARS-CoV-2 vaccination report & interview on BBC Points West evening news |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Coverage of publication on antibody levels following SARS-CoV-2 vaccination, including interview with a corresponding author, Nic Timpson, from ALSPAC cohort. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.bbc.co.uk/news/uk-england-bristol-64392784 |
| Description | Press release for Antibody levels following SARS-CoV-2 vaccination publication |
| 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 | Purpose to inform general public of results from latest publication. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.kcl.ac.uk/news/how-much-of-a-boost-do-booster-covid-19-jabs-give-1 |
| 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 | 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 | 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 | 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 | R Denholm & G Cezard Presentation at Royal Statistical Society 2022 International Conference - Sep 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Rachel Denholm and Genevieve Cezard presented 'Big data during the COVID-19 pandemic' at Royal Statistical Society 2022 International Conference. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://virtual.oxfordabstracts.com/#/event/2726/submission/304 |
| Description | R Denholm (on behalf of R Knight) Presentation at Royal Statistical Society 2022 International Conference - Sep 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Rachel Denholm presented 'Association of COVID-19 with arterial and venous vascular diseases: a population-wide cohort study of 48 million adults in England and Wales' on behalf of Rochelle Knight at the Royal Statistical Society 2022 International Conference. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://virtual.oxfordabstracts.com/#/event/2726/submission/63 |
| Description | Refereed conference poster - Longitudinal Linkage Collaboration. Welcome Trust Longitudinal Studies 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 presented a poster at this WT longitudinal research conference describing the UK LLC. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Report in The Conversation news site about Antibody levels following SARS-CoV-2 vaccination publication |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Invited to write a news story about the recent publication. News story page has been viewed several thousand times across several countries around the world. Comments and discussion was had on the news story comments section. Following publication we were contacted by journalists with questions about the publication. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://theconversation.com/covid-booster-vaccines-how-a-third-dose-may-help-vulnerable-people-level... |
| Description | Response to media enquiry |
| 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 | UK health inequalities made worse by Covid crisis, study suggests |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.theguardian.com/world/2021/jun/14/uk-health-inequalities-made-worse-by-covid-crisis-stud... |
| Description | Review and Input to the UK Longitudinal Linkage Collaboration Privacy Policy, Set of Frequently Asked Questions and Info-graphic |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | The UK Longitudinal Linkage Collaboration Public Involvement panel were invited to review and provide input to the development of the Participant Notification Sheet, Privacy Policy, set of Frequently Asked Questions and large info-graphic. This involved a working group at the start who reviewed the above documents. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://ukllc.ac.uk/ |
| Description | Royal Statistical Society International Conference 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | A presentation of recent research on COVID-19 serology data in a special session entitled "Health data science for COVID-19 research". |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://virtual.oxfordabstracts.com/#/event/2726/program?session=36394&s=4662 |
| Description | S Ip (on behalf of V Walker) Presentation at Royal Statistical Society 2022 International Conference - Sep 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Samantha Ip presented 'Risk of myocarditis and pericarditis following BNT162b2 and ChAdOx1 COVID-19 vaccinations' on behalf of Venexia Walker at the Royal Statistical Society 2022 International Conference. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://virtual.oxfordabstracts.com/#/event/2726/submission/154 |
| Description | School Visit |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Schools |
| Results and Impact | In March 2022, C.Park played a key role in science week for 'Kings Court First School' in Old Windsor. She led an assembly of 300 4-10 year olds and spoke to them about becoming a scientist. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Short Video- Psychological Distress Before and During the COVID-19 Pandemic |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Bitesize results from the COVID-19 Longitudinal Health and Wellbeing National core study. Psychological Distress Before and During the COVID-19 Pandemic: Sociodemographic Inequalities in 11 UK Longitudinal Studies. Featuring Dr Kishan Patel |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://youtu.be/PXQfdmvGXmI |
| Description | Social Media Channel: Twitter |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A twitter account was set up to disseminate the outputs of the study to a wide audience. The channel currently has almost 500 followers. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://analytics.twitter.com/user/COVID19_LHW/home |
| Description | Super Cohort: a new resource for LPS COVID-19 research |
| 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 & Robin Flaig hosted an online workshop with support from CLOSER to describe the initial design and development of the UK LLC to the longitudinal community and to gain feedback on needs and design opportunities. |
| Year(s) Of Engagement Activity | 2021 |
| 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 - 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 - 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 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 Communications Network 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 | A meeting held with people responsible for communications and public involvement in partner studies. Sharing updates on LHW NCS, UK LLC and discussions on how best to support studies with fair processing materials in future. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK LLC Data Access Public Review Panel 13 May |
| 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 | Six public contributors took part in the first Data Access Public Review Panel (DAPRP) meeting. This involved researchers presenting their research applications to the UK LLC and sparked questions and discussions around these applications being in the public interest, being written in lay English and including a public involvement plan. Afterwards, researchers amended their applications with recommendations from the panel. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK LLC Data Access Public Review Panel 18 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 | Four public contributors took part in the first Data Access Public Review Panel (DAPRP) meeting. This involved researchers presenting their research applications to the UK LLC and sparked questions and discussions around these applications being in the public interest, being written in lay English and including a public involvement plan. Afterwards, researchers amended their applications with recommendations from the panel. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK LLC Data Access Public Review Panel 22 April |
| 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 | Four public contributors took part in the first Data Access Public Review Panel (DAPRP) meeting. This involved researchers presenting their research applications to the UK LLC and sparked questions and discussions around these applications being in the public interest, being written in lay English and including a public involvement plan. Afterwards, researchers amended their applications with recommendations from the panel. |
| Year(s) Of Engagement Activity | 2022 |
| 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 Public Advisory Group Feedback for IPDLC Abstract |
| 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 | Three public contributors provided feedback for an abstract submission to the International Population Data Linkage Conference. The abstract was accepted and UK LLC Public Involvement will be presented on at the conference this year. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK LLC Public Advisory Group Meeting - 21st March |
| 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 | Six public contributors, all part of the UK LLC Public Advisory Group (PAG) members attended the first meeting. This sparked questions and discussions around growth and improvement of the UK LLC and ongoing work with the members of the PAG. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK LLC Public Advisory Group Meeting - 22nd April |
| 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 | Four public contributors, all part of the UK LLC Public Advisory Group (PAG) members attended the first meeting. This sparked questions and discussions around growth and improvement of the UK LLC and ongoing work with the members of the PAG. The group will work on public engagement strategies and provided feedback on work the UK LLC are doing with animations and on the website. |
| Year(s) Of Engagement Activity | 2022 |
| 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 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 Contributor Feedback for Set of Three Animation |
| 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 | Five public contributors fed back on the new set of three animations for the UK LLC data flow. Feedback was combined and fed back to The Like Minded animation developers to embed changes. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK LLC Public Contributor Feedback for UK LLC Website |
| 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 | Thirteen public contributors fed back on the UK LLC Wesbite. Feedback was combined and presented to the wider UK LLC team which sparked discussions. Amendments to the website will be made such as uploading minutes, immediately following the meetings. |
| Year(s) Of Engagement Activity | 2022 |