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)
- University College London (Collaboration)
- UNIVERSITY OF LEICESTER (Collaboration)
- British Heart Foundation (BHF) (Collaboration)
- BRADFORD TEACHING HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- Health Data Research UK (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- UNIVERSITY OF ABERDEEN (Collaboration)
- University of Ulster (Collaboration)
- UNIVERSITY OF GLASGOW (Collaboration)
- London School of Hygiene and Tropical Medicine (LSHTM) (Collaboration)
- Norwegian Institute of Public Health (Collaboration)
- UNIVERSITY OF EDINBURGH (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- KING'S COLLEGE LONDON (Collaboration)
- University of Bristol (Collaboration)
People |
ORCID iD |
Publications
Andrews C
(2022)
OpenSAFELY: Representativeness of electronic health record platform OpenSAFELY-TPP data compared to the population of England.
in Wellcome open research
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
Bingham DD
(2021)
Covid-19 lockdown: Ethnic differences in children's self-reported physical activity and the importance of leaving the home environment; a longitudinal and cross-sectional study from the Born in Bradford birth cohort study.
in The international journal of behavioral nutrition and physical activity
Bowyer RCE
(2023)
Characterising patterns of COVID-19 and long COVID symptoms: evidence from nine UK longitudinal studies.
in European journal of epidemiology
Brooks-Pollock E
(2023)
Voluntary risk mitigation behaviour can reduce impact of SARS-CoV-2: a real-time modelling study of the January 2022 Omicron wave in England.
in BMC medicine
| 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 | 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 | Membership of a guideline committee |
| URL | https://www.adruk.org/ |
| Description | Andy Boyd met with the MRC Regulatory Support Unit |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or Improved professional practice |
| 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 the CLS run pilot of the new ESRC funded birth cohort study. |
| 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 | Contribution to Our Future Health programme development |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| 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 | 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 | 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 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 | UKRI Clean Air Programme Data Science Integration Steering Group |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| URL | https://www.ukcleanair.org/projects/clean-air-framework/ |
| 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 | 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 | 02/2021 |
| End | 03/2022 |
| 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 | 09/2022 |
| End | 03/2025 |
| 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 | 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 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 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 | 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 | 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 | 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 | 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 | Exploring Multimorbidity in Early-life through Genetic Epidemiology (EMERGENT) |
| Organisation | Norwegian Institute of Public Health |
| Country | Norway |
| Sector | Public |
| PI Contribution | I am a named collaborator on this award led by PI Laurie Hannigan. My role is to provide expert insight into data linkage availability, access mechanisms and the use and interpretation of linked Electronic Health Records to the PI. |
| Collaborator Contribution | To date I have contributed to the development of the project proposal which has now successfully been awarded. |
| Impact | This project has only recently started. |
| Start Year | 2022 |
| 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 | 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 | The group has had an initial meeting which agreed group Terms of Reference and conducted an initial identification and prioritisation of issues. The next group meeting is scheduled for 4th July - work plans to address the top three identified priorities have been developed in the interim. |
| Start Year | 2022 |
| 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 | 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 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 | Once the "UK LLC data processing pipeline" - see separate entree for details - has been completed to harmonise data within the UK LLC's Trusted Research Environment (TRE) database. Data is feed into a "disclosure control pipeline". The purpose of this is to automatically/programmatically analyse controls of all data tables within the database for potentially disclosure variables or cell values. Data that arrives in the database should already been de-personalised. However, this allows a secondary check to ensure data sent by any of the data depositors passes a disclosure risk assessment. The disclosure risk assessment process looks for the following risks: 1) Varchar columns >60 chars - as these could be free text which has elevated risk 2) Proper nouns in cells - as these could be names of places or people 3) Postcodes structures in cells 4) Dates - as these are high risk e.g. DoB Once the risk have been flagged a manual review process is required to check the risks are genuine. The operate can then chose to pass or fail the variable or cells in question. If failed they must select to either NULL or ENCRPYT the field/values in question. Once complete a separate python program "disclosure_actor" will act on the database with the ENCRPYT or NULL action as appropriate as well as updating any associated metadata. |
| 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 checkers |
| Description | The File checkers are user tools 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". There are 2 files checkers which check the formats of the 2 file types required from studies. One for file1's (demographics) and one for file2's (de-personalised attribute data e.g. response to questionnaires). Both checkers conduct several 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 checkers 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 | 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 | 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 | 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 | 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: 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 | 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 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 | 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 | 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 | 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 | 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 | 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 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Robin Flaig (UK LLC Co-Director) delivered a presentation on 'The Challenges of Creating a New Longitudinal Populations Studies Linked Data Resource' |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ipdln.org/2022-conference |
| Description | IPDLN Conference 2022 Presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by Stela McLachlan - The Challenges of Developing an Applications Process for a New Linked Data Resource |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ipdln.org/2022-conference |
| Description | 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 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 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: 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 | Spoke through UK LLC strategy and future planning |
| Year(s) Of Engagement Activity | 2022 |
| Description | Public Advisory Group Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | Meeting held to discuss strategy for UK LLC - future planning, how we communicate, etc. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Public Advisory Group meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The meeting was held to discuss strategy for UK LLC - future planning, how we communicate, etc. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Public Engagement in Data Research Initiative (PEDRI) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed PPIE in UK LLC and the potential for UK LLC to join PEDRI |
| Year(s) Of Engagement Activity | 2022 |
| Description | 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 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 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 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 |
| Description | UK LLC Q&A and Public Involvement Training Session |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | All of UK LLC Public Involvement members were given the opportunity to talk with UK LLC senior management to ask questions and discuss any topics relating to the work being done. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK LLC Strategic Advisory Group Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Comprising at least 8 independent members across disciplines and sectors and four nations, including 3 public contributors, who all represent leaders in their field who are advocates for the UK LLC both nationally and internationally. The Committee received a report enhanced with presentations from the Directors, on progress of the UK LLC, the Committee provided comment and advise on strategic direction and engagement. Agenda items included scientific strategy and the shaping of future funding submissions, future sustainability. The Group will meet every six months for the first year, after which frequency will be reviewed. The Group: · Received written and oral updates on progress · Evaluated UK LLC's scientific outputs · Advised on the strategic direction of the UK LLC · Advised on communication and engagement · Advised on collaborations and partnerships |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK LLC/CLOSER Disclosure Control Training |
| 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 | Organised and Chaired a training course on disclosure risk assessment and control; 07/07/2 to 05/09/22 - A substantial (four session) training course organised by UK LLC and CLOSER in partnership with the UK Anonymisation Network. Providing expert professional training for LPS Data Managers on disclosure risk assessment and control mechanisms with an emphasis on LPS moving to a Trusted Research Environment way of working. 36 individuals attended the course - with the outputs being (1) LPS and UK LLC specific disclosure control plans which have been reviewed by internationally leading experts. (2) new insights into LPS Disclosure risk which will inform UK LLC and LPS policy development and potentially generate efficiencies for research users of TREs. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK Longitudinal Linkage Collaboration Comms Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A presentation/meeting was lead by the UK LLC Communications and Engagement Officer to the UK LLC Communications Network from involved collaborators. This involved over 20 individuals attending a zoom meeting on all everything happening with communications in the UK LLC. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK Longitudinal Linkage Collaboration Comms 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 | A workshop was run by the UK LLC Communications and Engagement Officer to the UK LLC Communications Network from involved collaborators. This involved over 20 individuals attending a zoom workshop on all everything happening with communications in the UK LLC. |
| Year(s) Of Engagement Activity | 2021 |
| Description | UK Longitudinal Linkage Collaboration Phase 2 Website Launch |
| 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 | The UK LLC Communications and Engagement Officer worked with the website development team in the University of Bristol to create and launch phase 2 of the UK LLC website to include factors such as The Data Use Register, Public Involvement and How We Work sections. This also involved input from the wider UK LLC team and public contributors |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukllc.ac.uk/ |
| Description | UK Longitudinal Linkage Collaboration Public Involvement Induction |
| 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 | All members of the four Public Involvement groups were invited to the UK Longitudinal Linkage Collaboration Public Involvement Induction. This lasted for 1 hour in the form of a presentation to the contributors. The public contributors were able to ask questions and allowed the opportunity for any following discussion. |
| Year(s) Of Engagement Activity | 2020,2022 |
| Description | UK Longitudinal Linkage Collaboration Senior Management Team Meeting With UK Longitudinal Linkage Collaboration Public Involvement Strategic Advisory Group |
| 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 UK LLC Strategic Advisory Group met to be introduced to the UK LLC Senior Management team to outline roles and responsibilities and to discuss current work. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK Longitudinal Linkage Collaboration Twitter launch |
| 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 | The UK LLC launched the Twitter account - posting regular updates to make the wider research community aware of the resource. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://twitter.com/UKLLCollab |
| Description | UK Longitudinal Linkage Collaboration Verbal YouTube Public Involvement Induction |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | A verbal presentation of the UK Longitudinal Linkage Collaboration's Public Involvement Induction was created and uploaded to the UK LLC YouTube channel. This is available for the whole Public Involvement Network and beyond to view and learn more about the role Public Involvement within the UK LLC. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UK Molecular Epidemiology Group Meeting - Presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by Robin Flaig on: a trusted research environment for the longitudinal research community and Stela McLachlan on the UK LLC application process to access data in the UK LLC TRE. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UKDS Blog post: Behind the scenes of collaborating on a Covid-19 National Core Study |
| 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 | We've asked our #DataImpactFellows to respond to the theme of 'communicating/translating data-driven research'. In this post, Bozena Wielgoszewska reflects on the importance of good communication in her collaboration on the Covid-19 Longitudinal Health and Wellbeing National Core Study, a project that is generating new data-driven insights into the Covid-19 furlough scheme. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://blog.ukdataservice.ac.uk/behind-the-scenes-collaboration/ |
| Description | UKHSA National Core Studies workshop |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A meeting of all the National Core Studies with the UKHSA to evaluate key evidence generated, insights for the next pandemic and future plans. I presented the serology work from the Longitudinal Health and Wellbeing NCS as a case example. As a result, I was invited to present the serology work at the ONS. |
| Year(s) Of Engagement Activity | 2022 |
| Description | USHER Institute Annual Lecture 2022 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A stall held at the USHER institute annual lecture, within the University of Edinburgh. This showcased information on UK LLC and previewed our animation. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Understanding DWP, HMRC and National Pupil Database data requirements for the longitudinal community |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | UK LLC organised and ran a Pan-UK workshop with domain experts in using DWP and HMRC data to understand data user requirements, to scope the data necessary to underpin diverse requirements of the UK LPS community and to discuss potential requirements for deriving key outcomes and assessing representativeness and developing statistical weightings. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Understanding DWP, HMRC and National Pupil Database data requirements for the longitudinal community |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussion of additional data sets/sources: Objective: -to identify additional DWP/HMRC data of interest which they are not aware of. -to identify the key expo-sure/outcomes they wish to derive so UK LLC can reverse engineer the required data sources. Discover what exposure/outcomes attendees want to derive for research and the scientific justification for these. |
| Year(s) Of Engagement Activity | 2022 |
| Description | V Walker 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 | Venexia Walker presented 'Coronavirus post-acute long-term effects: constructing an evidence base' at the HDR UK SW Regional Meeting on 21/09/2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | V Walker Presentation at WHO Global Consultation - Monkeypox Vaccine Study Designs Aug 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Venexia Walker presented 'Observational studies registry and sharing protocols - why is that important?' based on our protocol approach to COVID-19 infection and vaccine work. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Website: https://www.ucl.ac.uk/covid-19-longitudinal-health-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 Website was created to inform all audiences on the outputs of the COVID-19 Longitudinal Health and Wellbeing National Core Study and teh CONVALESCENCE Study. The website has pages dedicated to each key audience. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing |
| Description | Workshop on the UK Longitudinal Linkage Collaboration on Access to the UK LLC |
| 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 was run by the UK LLC Team members to a number of researchers interested in accessing data through the UK LLC. This involved over 40 individuals attending a zoom workshop on the whole process of applying to the UK LLC with opportunity for questions and discussions. The UK LLC noticed an increase of interest in applying to access data. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Y Wei 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 | Yinghui Wei presented 'Risk factors for Long COVID: big data analytics using OpenSAFELY' at the Royal Statistical Society 2022 International Conference |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://virtual.oxfordabstracts.com/#/event/2726/submission/233 |
| Description | • Kantar Public/CLS: ELC-FS Stakeholder Activation 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 | Contribute governance and record linkage insights to the design of the ESRC Early Life Cohort Feasibility Design |
| Year(s) Of Engagement Activity | 2022 |