COVID-19 Longitudinal Health and Wellbeing - National Core Study (LWH-NCS)
Lead Research Organisation:
University College London
Department Name: UNLISTED
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Technical Summary
The Longitudinal Health and Wellbeing National Core Study will improve understanding of C-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 C-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. For the first 6 months, these include short- and medium-term physical and mental health impacts of those who have had C-19 infection, risks of re-infection and role of risk factors, health effects of interruption to health care services, and the interplay between socioeconomic and health effects of viral suppression policies. Our outputs will include briefing notes as well as scientific reports in order to optimise policy influence.
Organisations
- University College London (Lead Research Organisation)
- TEDS Research Centre (Collaboration)
- BRADFORD TEACHING HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- Health Data Research UK (Collaboration)
- Bradford Institute for Health Research (BIHR) (Collaboration)
- Understanding Society (Collaboration)
- UNIVERSITY OF LIVERPOOL (Collaboration)
- Medical Research Council (MRC) (Collaboration)
- Office for National Statistics (Collaboration)
- University of Bristol (Collaboration)
- Generation Scotland (Collaboration)
- University College London (Collaboration)
- UNIVERSITY OF LEICESTER (Collaboration)
- QUEEN'S UNIVERSITY BELFAST (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- National Institute for Health and Care Excellence (NICE) (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- University of the West of England (Collaboration)
- UNIVERSITY OF GLASGOW (Collaboration)
- Economic and Social Research Council (Collaboration)
- English Longitudinal Study of Ageing (ELSA) (Collaboration)
- London School of Hygiene and Tropical Medicine (LSHTM) (Collaboration)
- Millennium Cohort Study (MCS) (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- UNIVERSITY OF YORK (Collaboration)
- NHS Wales Informatics Service (Collaboration)
- UNIVERSITY OF EDINBURGH (Collaboration)
- KING'S COLLEGE LONDON (Collaboration)
People |
ORCID iD |
Publications
Banerjee A
(2021)
Excess deaths in people with cardiovascular diseases during the COVID-19 pandemic.
in European journal of preventive cardiology
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
Cooksey R
(2022)
Shielding reduced incidence of COVID-19 in patients with inflammatory arthritis but vulnerability is associated with increased mortality.
in Rheumatology (Oxford, England)
Dale CE
(2023)
The impact of the COVID-19 pandemic on cardiovascular disease prevention and management.
in Nature medicine
Di Gessa G
(2022)
Pre-pandemic mental health and disruptions to healthcare, economic and housing outcomes during the COVID-19 pandemic: evidence from 12 UK longitudinal studies.
in The British journal of psychiatry : the journal of mental science
Elkheder M
(2023)
Translating and evaluating historic phenotyping algorithms using SNOMED CT
in Journal of the American Medical Informatics Association
Horne EMF
(2022)
Waning effectiveness of BNT162b2 and ChAdOx1 covid-19 vaccines over six months since second dose: OpenSAFELY cohort study using linked electronic health records.
in BMJ (Clinical research ed.)
Hulme WJ
(2023)
Comparative effectiveness of BNT162b2 versus mRNA-1273 covid-19 vaccine boosting in England: matched cohort study in OpenSAFELY-TPP.
in BMJ (Clinical research ed.)
Jacques Wels
(2022)
Mental and social wellbeing and the UK coronavirus job retention scheme: Evidence from nine longitudinal studies.
in Social science & medicine (1982)
Jones H
(2023)
Breastfeeding initiation and duration through the COVID-19 pandemic, a linked population-level routine data study: the Born in Wales Cohort 2018-2021
in BMJ Paediatrics Open
| 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 | 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 | 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 Animated Logo |
| Description | This is an animated version of the UK LLC Logo |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2020 |
| Impact | This animation was used by the UK LLC and partner studies to reinforce brand identity |
| 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 | Case Studies |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | These case studies are many examples of how the work from the studies changed services during the pandemic, including the vaccine rollout Long Covid GP coding and treatment options. |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing/case-studies |
| Description | Citations in policy documents- Long COVID Coding |
| Geographic Reach | National |
| Policy Influence Type | Citation in clinical reviews |
| URL | https://www.nice.org.uk/guidance/ng188 |
| Description | Citations in policy documents- Long COVID Coding |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.adalovelaceinstitute.org/report/knotted-pipeline-health-data-inequalities/ |
| Description | Citations in policy documents- Long COVID Risk Factors |
| Geographic Reach | Australia |
| Policy Influence Type | Citation in other policy documents |
| URL | https://aci.health.nsw.gov.au/__data/assets/pdf_file/0004/695983/Evidence-Check-Post-acute-sequelae-... |
| Description | Citations in policy documents- Long COVID Risk Factors |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.brookings.edu/research/how-much-is-long-covid-reducing-labor-force-participation-not-muc... |
| Description | Citations in policy documents- Long COVID Risk Factors |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.rki.de/DE/Content/Infekt/EpidBull/Archiv/2022/Ausgaben/44_22.pdf?__blob=publicationFile |
| Description | Citations in policy documents- Long COVID SAGE report |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.oecd-ilibrary.org/social-issues-migration-health/panorama-de-la-sante-2021_fea50730-fr |
| Description | Citations in policy documents- Long COVID SAGE report |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.gov.scot/publications/coronavirus-covid-19-domestic-vaccine-certification-childrens-righ... |
| Description | Citations in policy documents- Long COVID SAGE report |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.oecd-ilibrary.org/social-issues-migration-health/health-at-a-glance-2021_ae3016b9-en |
| Description | Citations in policy documents-Long COVID SAGE report |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.hiqa.ie/reports-and-publications/health-technology-assessment/protective-measures-groups... |
| 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 | Guest Speaker on Independent SAGE weekly broadcast October 28th 2022 |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | This briefing has been viewed by thousands of members of the public. It has been widely shared and discussed on social media. |
| URL | https://www.independentsage.org/weekly-briefing-28th-october-2022/ |
| Description | Insights and Impact Summary |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | This document summarises the policy and practice changes that occurred as a result of this study |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing/summary-2021-2022 |
| 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 | 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 | Summary of policy mentions |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in other policy documents |
| Impact | The findings from our study have bee used in the following policy documents to inform policies around the long term health and wellbeing of people with COVID-19 and Long Covid |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing/policy-documents |
| Description | COVID-19 Longitudinal Health and Wellbeing - National Core Study (LWH-NCS) |
| Amount | £9,862,000 (GBP) |
| Funding ID | MC_PC_20030 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 10/2020 |
| End | 03/2021 |
| 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 | DATAMIND: Data Hub for Mental health INformatics research Development |
| Amount | £2,031,434 (GBP) |
| Funding ID | MR/W014386/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2021 |
| End | 08/2024 |
| Description | 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 |
| Title | Governance uplift of contributing UK LLC studies |
| Description | UK LLC have provided resources and guidance (on strategy and materials) to studies to adapt their existing governance mechanisms for record linkage to enable participation in the UK LLC. This supports the legal basis for the UK LLC and enables the negotiation and creation of single data sharing agreements covering all contributing studies. This distributed governance mechanism is globally unique and an innovation of the UK LLC andLHW NCS. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This has enabled the governance of the UK LLC to be established and data sharing agreements to be established with eg NHS Digital and for negotiations to progress with HM Revenue and Customs, Department for Work and Pensions and Department for Education. |
| Title | OpenSAFELY Long Covid Dashboard |
| Description | Dashboard to assess if GPs are coding for Long Covid |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Has informed NICE on GP numbers coding Long Covid |
| URL | https://reports.opensafely.org/reports/clinical-coding-of-long-covid-in-english-primary-care-a-feder... |
| Title | Policies & procedures for the delegated approval mechanism for onward sharing NHS Digital data |
| Description | A set of polices and procedures necessary for the delegated decision making of which applicants can access linked NHS Digital records. These documents include a committee SOP and TOR: these outlines membership, roles and responsibility of UK LLC Data Access Committee in reviewing applications to access UK LLC data on behalf of NHS Digital. This document was endorsed by the UK LLC DAC and will be submitted during the annual reporting round to the UK LLC Strategic Advisory Committee. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Change in the application process review, dividing responsibilities between different Panels. |
| Title | UK LLC Access Process |
| Description | Development of the processes around applying for access to the UK LLC data, including 3-stage review process. This process is based on POL-ISM-003_UKLLC_DataAccessAcceptableUsePolicy_V1 and two internal SOPs: SOP-APP-0003_ProcessForResearchersToApplyToAccessDataInTRE_V1 and SOP-APP-0010_ProcessForResearchersToApplyToAmendTheirProjects_V1. These documents outline the rules of access to the UK LLC, with internal SOPs dealing with step-by-step application, review and amendments process. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Change in the way applicants apply to get an access to data in the UK LLC |
| URL | https://ukllc.ac.uk/apply |
| Title | UK LLC Codelist Template |
| Description | The UK LLC Codelist Template is a tool which allows researchers applying for access to data, specifically linked health records, held in the UK LLC TRE to define the subset of data they need to access in order to carry out their research. The UK LLC onwardly shares data from linked sources, such as NHS Digital, on the condition that data minimisation principles are upheld. Where datasets need to be minimised, the UK LLC subset these datasets by medical codelists (e.g. SNOMED, ICD10, etc.), which can be defined by researchers using the Codelist Template. The request form is managed and maintained outside of the TRE by the Data Team, and is publicly available. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The UK LLC Codelist Template is an integral part of the UK LLC data provision pipeline. During data provision, the completed codelist template is used as an input to the data provisioning pipeline, which automatically provisions database views to approved researchers in the TRE. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. |
| URL | https://ukllc.ac.uk/ |
| Title | UK LLC Data Request Form |
| Description | The UK LLC Data Request Form is a tool which allows researchers applying for access to data held in the UK LLC TRE to browse and request data relevant for their research project. The request form is automatically generated by the UK LLC data pipeline and is managed and maintained outside of the TRE by the Data Team. The request form compiles key information such as block descriptions and keywords, as well as relevant links provided by the LPS and linked data sources about their data. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The UK LLC Data Request Form is an integral part of both the UK LLC application process as well as the data provision pipeline. When a UK LLC Application (including the data request) is approved through the access process, the completed request form is used as an input to the data provisioning pipeline, which automatically provisions database views to approved researchers in the TRE. The UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. |
| URL | https://ukllc.ac.uk/ |
| Title | UK Longitudinal Linkage Collaboration (UK LLC) |
| Description | A novel pan-UK and interdisciplinary Trusted Research Environment for longitudinal research which will host the COVID-19 relevant data of ~15 major UK longitudinal studies and systematically link the participants of these studies to health, administrative and geospatial (natural environment and neighbourhood) records. The UK LLC has a bespoke governance framework that will enable any legitimate researcher to apply for access and subsequently - if approved - gain access to a project specific sub-set of the available data within a secure analysis environment. The UK LLC is designed to be sustainable and scalable to other (non-COVID-19) use cases. It has an active public/participant involvement and engagement aspect which aims to improve the design of the resource through public involvement and to help ensure the resource is sustainable and acceptable. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2020 |
| Provided To Others? | No |
| Impact | The UK LLC is a critical component of the Longitudinal Health & Wellbeing National Core Study which has been commissioned by the UK Chief Scientific Advisor in response to the COVID-19 pandemic. |
| Title | UKLLC 'How to apply' Guide |
| Description | Document outlining application and review process step-by step |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Helps applicants understand the application and review process ahead of applying to access the data in the UK LLC |
| Title | UKLLC Application form |
| Description | Application form to apply for the access to the data in the UK LLC |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Allowing applicants to describe their proposed projects and other relevant information need to gain access to the data in the UK LLC |
| Title | UKLLC Application form Guide |
| Description | Document offering guidance on how to complete application form, question-by-question |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Helps applicants complete the application form |
| Title | UKLLC CV User Guide |
| Description | Document outlining CV requirements, listing the sections the UK LLC would like to see included in researcher's CVs in order to asses them as Safe Researchers (part of 'Five Safes' framework). |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Helps applicants creating CV as a part of their application to access the data in the UK LLC |
| Title | 1970 British Cohort Study Response Dataset, 1970-2016 |
| Description | The 1970 British Cohort Study (BCS70) began in 1970 when data were collected about the births and families of babies born in the United Kingdom in one particular week in 1970. Since then, there have been nine further full data collection exercises in order to monitor the cohort members' health, education, social and economic circumstances. These took place when respondents were aged 5 in 1975, aged 10 in 1980, aged 16 in 1986, aged 26 in 1996, aged 30 in 1999-2000 (SN 5558), aged 34 in 2004-2005, aged 42 in 2012 and aged 46 in 2016-18. A range of sub-sample and supplementary surveys have also been conducted, and a separate dataset covering response to BCS70 over all waves is available under SN 5641, 1970 British Cohort Study Response Dataset, 1970-2012. Further information about the BCS70 and may be found on the Centre for Longitudinal Studies website. As well as BCS70, the CLS now also conducts the NCDS series. How to access genetic and/or bio-medical sample data from a range of longitudinal surveys: A useful overview of the governance routes for applying for genetic and bio-medical sample data, which are not available through the UK Data Service, can be found at Governance of data and sample access on the METADAC (Managing Ethico-social, Technical and Administrative issues in Data Access) website. The BCS70 Response Dataset contains response outcomes for all main sweeps of BCS70 (1970-2016). The fourth edition (March 2021) includes Sweep 10 outcomes and has been streamlined by removing cases which have never participated in any main sweep survey and are no longer being issued. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | https://cls.ucl.ac.uk/cls-studies/1970-british-cohort-study/ |
| URL | https://beta.ukdataservice.ac.uk/datacatalogue/doi/?id=5641#2 |
| Title | Avon Longitudinal Study of Parents and Children |
| Description | ALSPAC is a longitudinal birth cohort study which enrolled pregnant women who were resident in one of three Bristol-based health districts in the former County of Avon with an expected delivery date between 1st April 1991 and 31st December 1992. Around 14,000 pregnant women were initially recruited. Detailed information has been collected on these women, their partners and subsequent children using self-completion questionnaires, data extraction from medical notes, linkage to routine information systems and from hands-on research clinics. Additional cohorts of participants have since been enrolled in their own right including fathers, siblings, children of the children and grandparents of the children. Ethical approval for the study was obtained from the ALSPAC Ethics and Law Committee (IRB00003312) and Local Research Ethics. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2014 |
| Provided To Others? | Yes |
| Impact | http://www.bristol.ac.uk/alspac/ |
| URL | http://service.re3data.org/repository/r3d100011256 |
| Title | Born in Bradford |
| Description | Born in Bradford is one of the biggest and most important medical research studies undertaken in the UK. The project started in 2007 and is looking to answer questions about our health by tracking the lives of 13,500 babies and their families and will provide information for studies across the UK and around the world. The aim of Born in Bradford is to find out more about the causes of childhood illness by studying children from all cultures and backgrounds as their lives unfold. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | https://borninbradford.nhs.uk/ |
| URL | http://service.re3data.org/repository/r3d100011818 |
| Title | CVD-COVID-UK/COVID-IMPACT |
| Description | See https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/ CVD-COVID-UK established a novel population wide resource in partnership with NHS Digital, comprising of a range of linked datasets covering the entire population of England, including o hospital data o death registrations o primary care data o community dispensing data o Covid-19 vaccination data and lab test o Data from intensive care units and from cardiovascular specialist registries • |
| Type Of Material | Data analysis technique |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Results from analyses using this research database have informed national COVID-19 Advisory Groups and public health agencies on COVID-19 vaccine safety. |
| URL | https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/ |
| Title | Covid 19 questionnaire dataset |
| Description | NSHD study members were sent upto three online/postal questionnaires on COVID. In the first questionnaire, a variety of questions were asked to capture a physical and mental health and wellbeing, family and relationships, education, work, and finances during the first national lockdown. In the second questionnaire, we repeated many of the topic areas as in Wave 1, but included questions on health care, financial transfer and life events. For the third questionnaire, we additionally asked about the vaccination programme and long COVID. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Too early to say - numerous publications and impacts will be produced using these data in the future |
| URL | https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8732 |
| Title | English Longitudinal Study of Ageing: Waves 0-9, 1998-2019 |
| Description | The English Longitudinal Study of Ageing (ELSA) is a longitudinal survey of ageing and quality of life among older people that explores the dynamic relationships between health and functioning, social networks and participation, and economic position as people plan for, move into and progress beyond retirement. The main objectives of ELSA are to: construct waves of accessible and well-documented panel data; provide these data in a convenient and timely fashion to the scientific and policy research community; describe health trajectories, disability and healthy life expectancy in a representative sample of the English population aged 50 and over; examine the relationship between economic position and health; investigate the determinants of economic position in older age; describe the timing of retirement and post-retirement labour market activity; and understand the relationships between social support, household structure and the transfer of assets. Further information may be found on the ELSA project website, the Institute for Fiscal Studies: ELSA and Natcen Social Research: ELSA web pages. Health conditions research with ELSA - June 2021 The ELSA Data team have found some issues with historical data measuring health conditions. If you are intending to do any analysis looking at the following health conditions, then please contact elsadata@natcen.ac.uk for advice on how you should approach your analysis. The affected conditions are: eye conditions (glaucoma; diabetic eye disease; macular degeneration; cataract), CVD conditions (high blood pressure; angina; heart attack; Congestive Heart Failure; heart murmur; abnormal heart rhythm; diabetes; stroke; high cholesterol; other heart trouble) and chronic health conditions (chronic lung disease; asthma; arthritis; osteoporosis; cancer; Parkinson's Disease; emotional, nervous or psychiatric problems; Alzheimer's Disease; dementia; malignant blood disorder; multiple sclerosis or motor neurone disease). How to access genetic and/or bio-medical sample data from a range of longitudinal surveys: A useful overview of the governance routes for applying for genetic and bio-medical sample data, which are not available through the UK Data Service, can be found at Governance of data and sample access on the METADAC (Managing Ethico-social, Technical and Administrative issues in Data Access) web site. Harmonised dataset: The Harmonised dataset is originally compiled in Stata, and contains extra alphabetic missing value codes. An SPSS version is also deposited, but as SPSS does not accommodate alphabetic missing value codes in numeric variables, the codes have transferred as long numeric codes. While the missing values are fully labelled, users should be aware that only the Stata alphabetic codes are described in the documentation. Users who prefer to use the Stata version will need access to Stata SE/MP software, as the file contains over 2,047 variables (the limit for the standard Stata 'Intercooled' version). ELSA COVID-19 study: A separate ad-hoc study conducted with ELSA respondents, measuring the socio-economic effects/psychological impact of the lockdown on the aged 50+ population of England, is also available under SN 8688, English Longitudinal Study of Ageing COVID-19 Study. Wave 1 was first released on 30 September 2020. Latest edition of ELSA: For the 35th edition (July 2021), mortality variables Mortstat, Yrdeath, agedead2 and maincod have been removed from the index file at the depositor's request, due to finalised agreement with NHS Digital. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | https://www.ucl.ac.uk/epidemiology-health-care/research/behavioural-science-and-health/research/psychobiology/english-longitudinal-study-ageing-0 |
| URL | https://beta.ukdataservice.ac.uk/datacatalogue/doi/?id=5050#21 |
| Title | Generation Scotland SFHS Data Dictionary |
| Description | The GS:SFHS Data Dictionary is a set of information describing the contents, format, and structure of the phenotype data collected during recruitment (2006-2011) to the Generation Scotland Scottish Family Health Study (GS:SFHS), or derived subsequently from study data collected during recruitment. This dataset replaces the one at https://datashare.is.ed.ac.uk/handle/10283/2724 |
| Type Of Material | Database/Collection of data |
| Year Produced | 2018 |
| Provided To Others? | Yes |
| Impact | https://www.ed.ac.uk/generation-scotland |
| URL | https://datashare.ed.ac.uk/handle/10283/2988 |
| Title | 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 | UKCiC - ALSPAC longitudinal (during pandemic) immune response to SARS-CoV-2 data and samples collection (2020-2021) |
| Description | A three clinic, face to face, examination of participants in the ALSPAC cohort with and without SARS-CoV-2 infection history. Samples taken have been processed for detailed immunological data collection across three time points through 2020-2021. Data will be available through the ALSPAC cohort. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Examination and characterisation of population, non-hospitalised immune response to SARS-CoV-2 infection. participant status made available to current studies of long_COVID (as part of the National Core Studies). |
| URL | https://www.uk-cic.org |
| 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 | Collaborating UK LLC Study (ALSPAC) |
| Organisation | University of Bristol |
| Department | Avon Longitudinal Study of Parents and Children (ALSPAC) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | ALSPAC have provided data into the UK LLC and this is now being used for multiple research projects. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (Born in Bradford) |
| Organisation | Bradford Institute for Health Research (BIHR) |
| Department | Born in Bradford |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | BiB have provided data into the UK LLC and this is now being used by multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (ELSA) |
| Organisation | English Longitudinal Study of Ageing (ELSA) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demographic data collected since inception. Covid questionaire data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidance documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | ELSA have provided data into the UK LLC and this is now being used by multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (Generation Scotland) |
| Organisation | Generation Scotland |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | Generation Scotland have provided data into the UK LLC and this is now being used by multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (MCS) |
| Organisation | Millennium Cohort Study (MCS) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demographic data collected since inception. Covid questionaire data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidance documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | MCS have deposited data into the UK LLC - this is now being used in multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (MRC NHSD 1946) |
| Organisation | Medical Research Council (MRC) |
| Department | National Survey of Health and Development (NSHD) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | NHSD have deposited data into the UK LLC - this is now being used in multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (NCDS 1958 Cohort) |
| Organisation | University College London |
| Department | 1958 Birth Cohort/National Child Development Study |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records. Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demographic data collected since inception. Covid questionaire data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidance documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | NCDS have deposited data into the UK LLC - this is now being used in multiple research investigations. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (NICOLA) |
| Organisation | Queen's University Belfast |
| Department | Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | NICOLA have now provided data into the UK LLC and this is available for research into COVID-19 |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (TEDS) |
| Organisation | TEDS Research Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demograohic data collected since inception. Covid questionare data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidence documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | TEDS are committed to providing data into the UK LLC once their fair processing campaign is concluded. This will then produce a research-ready resource. |
| Start Year | 2020 |
| Description | Collaborating UK LLC Study (UKHLS, Understanding Society) |
| Organisation | Understanding Society |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Guidance and documentation towards fair processing and communications with participants. Guidance for formatting files. Mechanism for accessing studies' participant data linked to NHS Digital records.Shared knowledge and expertise in developing NHS Digital applications. |
| Collaborator Contribution | Longitudinal data including demographic data collected since inception. Covid questionaire data collected since the pandemic. In some cases biological data. Knowledge and expertise in the co-development of key materials e.g. fair processing materials. Knowledge and expertise in the development of guidance documents. Expertise in the strategic development of the UK LLC resource. |
| Impact | UKHLS have deposited data into the UK LLC - this is now being used in multiple research investigations. |
| Start Year | 2020 |
| Description | Collaboration with 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 | Data & Connectivity National Core Study (Health Data Research UK, Administrative Data Research UK, ONS) |
| Organisation | Administrative Data Research Network |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Uk LLC work closely with HDRUK via the UKLLC/Data & Connectivity 'interlock'. Through this the groups share insights and challenges: with UK LLC escalating 'shared challenges' to HDR UK attention (e.g. the need across Uk data science infrastructure to integrate health records across devolved boundaries) and to provide test-bed environment to resolve challenges. UK LLC provides insights to other HDRUK groups - eg the Outbrake Data Analysis Platform (ODAPP) on governance structures and TRE design. Andy Boyd sits on HDR UK review panels, advisory meetings and is contributing to the design of the HDRUK QQ2 application. |
| Collaborator Contribution | HDRUK provide advice on TRE design and provision of NHS data. The HDRUK Data & Connectivity forum provides an opportunity for networking and lobbying. HDRUK experts (eg David Seymour |
| Impact | Design of the UK LLC Applications for data sharing agreements (NHS, HMRC, DWP, DfE) Application to ADR UK for funding (under consideration) Design of potential novel data sharing agreements involving non-health departments to UK LLC via ONS as a data processor |
| Start Year | 2020 |
| Description | Data & Connectivity National Core Study (Health Data Research UK, Administrative Data Research UK, ONS) |
| Organisation | Health Data Research UK |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Uk LLC work closely with HDRUK via the UKLLC/Data & Connectivity 'interlock'. Through this the groups share insights and challenges: with UK LLC escalating 'shared challenges' to HDR UK attention (e.g. the need across Uk data science infrastructure to integrate health records across devolved boundaries) and to provide test-bed environment to resolve challenges. UK LLC provides insights to other HDRUK groups - eg the Outbrake Data Analysis Platform (ODAPP) on governance structures and TRE design. Andy Boyd sits on HDR UK review panels, advisory meetings and is contributing to the design of the HDRUK QQ2 application. |
| Collaborator Contribution | HDRUK provide advice on TRE design and provision of NHS data. The HDRUK Data & Connectivity forum provides an opportunity for networking and lobbying. HDRUK experts (eg David Seymour |
| Impact | Design of the UK LLC Applications for data sharing agreements (NHS, HMRC, DWP, DfE) Application to ADR UK for funding (under consideration) Design of potential novel data sharing agreements involving non-health departments to UK LLC via ONS as a data processor |
| Start Year | 2020 |
| Description | Data & Connectivity National Core Study (Health Data Research UK, Administrative Data Research UK, ONS) |
| Organisation | Office for National Statistics |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Uk LLC work closely with HDRUK via the UKLLC/Data & Connectivity 'interlock'. Through this the groups share insights and challenges: with UK LLC escalating 'shared challenges' to HDR UK attention (e.g. the need across Uk data science infrastructure to integrate health records across devolved boundaries) and to provide test-bed environment to resolve challenges. UK LLC provides insights to other HDRUK groups - eg the Outbrake Data Analysis Platform (ODAPP) on governance structures and TRE design. Andy Boyd sits on HDR UK review panels, advisory meetings and is contributing to the design of the HDRUK QQ2 application. |
| Collaborator Contribution | HDRUK provide advice on TRE design and provision of NHS data. The HDRUK Data & Connectivity forum provides an opportunity for networking and lobbying. HDRUK experts (eg David Seymour |
| Impact | Design of the UK LLC Applications for data sharing agreements (NHS, HMRC, DWP, DfE) Application to ADR UK for funding (under consideration) Design of potential novel data sharing agreements involving non-health departments to UK LLC via ONS as a data processor |
| Start Year | 2020 |
| Description | Digital Health and Care Wales |
| Organisation | NHS Wales Informatics Service |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Descriptive documentation to inform file handling and processing. Managing of timelines to deliver against milestones. Contracting and governance framework. Contracted Swansea University to develop new data processing capability for NHS DHCW. |
| Collaborator Contribution | Data processor. Unique systems and expertise for the processing and de-identification of data and sending to NHS Digital and the University of Leicester for linkage. Provision of unique linkage key for the linkage of welsh health data. |
| Impact | New data pipelines enabling DHCW to act as 'linkage broker' for UK LLC and contributing LPS. These have been used to (1) link studies to NHS Digital health records and (2) geocode participant address data and link this to environmental exposure models. This functionality is being extended to NHS Scotland and Wales records and an application is in place to use this to link to administrative records held by HM Revenue & Customs, Department for Work and Pensions and Department for Education via Office for National Statistics. The data arising from this are being used in multiple research projects for the National Core Studies programme. |
| Start Year | 2020 |
| Description | Geocoding University of Leicester |
| Organisation | University of Leicester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Jointly designed (with Swansea University) a novel research protocol for the secure and privacy preserving geocoding of participant address data and the formation of a Residential Household 'Spine' within the UK LLC. UoLeicester have established protocols for the systematic modelling of physical environment exposures across the UK. UK LLC with contributing LPS are providing privacy-preserving access to address data from a number of studies, access to future studies address data for linkage as it becomes available. This is in conjunction with UK SeRP. |
| Collaborator Contribution | Exposure data on air quality, environmental noise, greenspace to be linked to the cohorts. Co-development of novel pipeline for linkage. |
| Impact | Modelling of physical exposure estimates (see UK LLC data outputs ResearchFish entries). |
| Start Year | 2020 |
| Description | KCL |
| Organisation | King's College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | LSHTM |
| Organisation | London School of Hygiene and Tropical Medicine (LSHTM) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | Longitudinal Health and Wellbeing |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The UK LLC is the central resource for researchers across the Longitudinal Health and Wellbeing (LH&W) Programme, to address a range of questions central to the national Core Studies Programme. The UK LLC has enabled the sharing of information across the studies and uniquely provisioned this through one easy access route to the analysts associated with LH&W. |
| Collaborator Contribution | UCL partners are the key liaison with funders and co-ordinators of the wider LH&W programme. The analysts within UCL formed the key group representing the beta users of the system. Some of the studies based in UCL formed the original 'UK LLC think-tank' or Vanguard. |
| Impact | Linked NHSDigital has been provisioned to 12 research projects for 37 researchers to undertake projects of key significance to UK Government. These include: The seriological response to Covid-19, mental health and wellbeing consequences of contracting Covid-19; understanding occupational factors and Covid-19 risk, understanding the impacts of healthcare disruption on health. |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | Bradford Teaching Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | King's College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | London School of Hygiene and Tropical Medicine (LSHTM) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | National Institute for Health and Care Excellence (NICE) |
| Department | NICE International |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | University of Cambridge |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | University of York |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | NIHR Long Covid |
| Organisation | University of the West of England |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Collaborator Contribution | Long-term health consequences of C-19 (long-COVID) occur frequently. Most infections are not hospitalised; population studies are the place to understand individual and societal challenges of long-COVID. We have an established consortium of experts and platforms uniting linked national primary care registries and population cohorts. The national coverage of primary care registries captures all individuals presenting to their GP, with linked prescribing, consulting, referral and outcome data. Many with long-COVID do not seek care. Population cohorts, with repeat C-19 related questionnaires, overcome this limitation. Further, the standardised pre-pandemic health data enables dissection of the effects of infection versus progression of co-morbidity. Parallel analysis of cohorts and registries will address each question. With NICE, we will quantify adherence to diagnostic and management guidelines in GP records, and pilot a pop-up intervention to enhance adherence. Our findings will enhance diagnostic criteria, identify pathways for bespoke sub-phenotype intervention, and inform plans for health service delivery. |
| Impact | Successful grant application to NIHR |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | Bradford Teaching Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | King's College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | London School of Hygiene and Tropical Medicine (LSHTM) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | University of Cambridge |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | University of Glasgow |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | University of Leicester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | University of Liverpool |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | National Core Study LLHW |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. LHA is the lead for this project and is contributing data from its cohorts as well as personnel. We propose uniting distinct but complementary longitudinal studies already engaged in COVID-19 research, enriched with health and administrative data linkage, and enhanced by new, urgent data collection. This collective resource will be mined by a cadre of experienced analysts to provide rapid answers to existing and emerging priority research questions. |
| Collaborator Contribution | Project using data from longitudinal studies to address the impact of COVID-19 and of associated viral suppression measures on health and wealth to inform mitigating strategies. Partners are contriubuting longitudinal studies, data personnel and expertise. |
| Impact | Too early to report |
| Start Year | 2020 |
| Description | Secure eResearch Platform |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Co-development of pipeline for the linkage of data and it's provision within the Secure Research Platform. Development of guidance documentation. Liaison with Network of Longitudinal Studies. Management of the processes and relationships with partners to deliver. |
| Collaborator Contribution | Development and delivery of a bespoke Secure eResearch Platform. Technical support for database setup and data management. Analytical support for data curation. Governance support through meetings and advice and the sharing of example materials. |
| Impact | Swansea University (SeRP) are working with UK LLC to implement new data pipelines enabling the flows and linkage of data between the UK LLC and contributing LPS. These have been used to (1) link studies to NHS Digital health records and (2) geocode participant address data and link this to environmental exposure models. This functionality is being extended to NHS Scotland and Wales records and an application is in place to use this to link to administrative records held by HM Revenue & Customs, Department for Work and Pensions and Department for Education via Office for National Statistics. The data arising from this are being used in multiple research projects for the National Core Studies programme. |
| Start Year | 2020 |
| Description | Swansea University |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As described under other output headings |
| Collaborator Contribution | As described under other output headings |
| Impact | As described under other output headings |
| Start Year | 2020 |
| Description | 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 | 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 | Data impact blog - 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 | 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 | British Science Week Social Media Campaign |
| 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 year the Unit ran a social media campaign during British Science Week to showcase the many 'connections' that the unit has. |
| Year(s) Of Engagement Activity | 2023 |
| 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 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 chairs the CLOSER Data Linkage Community of Practice Group. This group is designed to share insights relating to data linkage amongst those working in this field in longitudinal research. The group also seeks to jointly identify mechanisms to address common barriers to linkages or to develop improved ways of working. The following studies/organisations are currently represented on the working group: 1946 National Survey of Health and Development; the 1958, 1970 and 2000-01 birth cohorts; the Avon Longitudinal Study of Parents and Children; Born in Bradford; British Regional Heart Study; Department for Education; Generations Study; Hertfordshire Cohort Study; Health and Employment After Fifty Study; Million Women's Study; Growing Up in Scotland; Northern Ireland Cohort for the Longitudinal Study of Ageing; Southampton Women's Survey; Twins UK; UK Womens Cohort Study; and Understanding Society. |
| Year(s) Of Engagement Activity | 2019,2020,2021 |
| URL | https://www.closer.ac.uk/our-networks/ |
| Description | CONVALESCENCE Study clinic reaches 100 |
| 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 | Update from the Convalescence team. Over 100 participants have been enrolled to take part in the Convalescence Deep Phenotyping Clinic! |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://blogs.ucl.ac.uk/covid19-lhw/2021/12/09/convalescence-study-recruits-over-100-participants/ |
| Description | COVID-19 Longitudinal Health and Wellbeing National Core Study AND Convalescence Study 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 | On November 17th and 18th 2022, the first face-to-face National Core Study conference took place, in London. Presentations included findings on: Long Covid, Serology, Mental Health, Society and Health, HealthCare disruption, UK LLC, OpenSAFELY, PPIE. Researchers from institutions from around the UK attended. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | 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 | Furlough had a protective effect on mental health - but it wasn't as good as working |
| 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 | Blog in The Conversation Furlough had a protective effect on mental health - but it wasn't as good as working Dr Wels Jacques |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://theconversation.com/furlough-had-a-protective-effect-on-mental-health-but-it-wasnt-as-good-a... |
| 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 | In the Media Summary |
| 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 | The work from this study has featured in hundreds of media outlets. Find a summary here. |
| Year(s) Of Engagement Activity | 2021,2022,2023 |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing/media-1 |
| Description | Invited Talk: BIHS 2021 Resilience in Research |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Chloe Park gave an Invited Talk at the Young Investigators session of the BIHS meeting, Brighton, Sep 2021, on Resilience in Research |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited to Present - UK Longitudinal Linkage Collaboration. Elizabeth Blackwell Institute Health Data Science Showcase |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd (UK LLC Director) presented an update on the UK LLC to this NHS and academic group providing insights into the development of a national Trusted Research Environment in order to help inform the development of a TRE approach within the NHS Bristol, North Somerset and South Gloucestershire Clinical Commissioning Groups (BNSSG CCG) 'better care partnership' vision (being co-developed with HDR UK). This relationship contains aspirations to link local cohorts (ie, ALSPAC) into this TRE environment and also draws on insights from the development of the ALSPAC TRE through the MRC MH Pathfinder award which included linkage of the cohort to data from multiple NHS Trusts within the BNSSG CCG. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited to Present - UK Longitudinal Linkage Collaboration. UK Biobank workshop on social science and environmental health linkages |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd presented to UK Biobank online workshop on developing non-health linkages within the UKBB cohort. This was based on progress made in this area by ALSPAC and UK Longitudinal Linkage Collaboration. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited to Present - Understanding Data for Population Research. Economic and Social Research Council Strategic Advisory Group. 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 | Andy Boyd (PI of the ESRC ADS Scoping Study) provided a summary of the scoping study findings to the Economic and Social Research Council Strategic Advisory Group. |
| Year(s) Of Engagement Activity | 2021 |
| Description | 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 | Professional Practitioners |
| Results and Impact | Blog for CLOSER by Robin Flaig on Launching an important piece of UK research infrastructure: the UK Longitudinal Linkage Collaboration |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://closer.ac.uk/news-opinion/blog/launching-an-important-piece-of-uk-research-infrastructure/?m... |
| 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 | Long COVID: female sex, older age and existing health problems increase risk - new research |
| 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 | Blog in The Conversation : Long COVID: female sex, older age and existing health problems increase risk - new research By Dr Ellen Thompson |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://theconversation.com/long-covid-female-sex-older-age-and-existing-health-problems-increase-ri... |
| 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 | New Website |
| 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 | New CONVALESCENCE Website |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.convalescence.ac.uk/ |
| Description | Origin of 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 | Professional Practitioners |
| Results and Impact | The Origin Story of the UK LLC By COVID-19 LH&W National Core Study, on 14 March 2022 By Robin Flaig |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://blogs.ucl.ac.uk/covid19-lhw/2022/03/14/the-uk-longitudinal-linkage-collaboration-uk-llc-orig... |
| Description | PPI Workshop addressing EHR and cohort analysis |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | 2 workshops with addressing EHR analysis: 1) Clinical coding 2) Health outcomes - Post covid events . Cardiovascular, diabetes and Mental health. Presentations from researchers outlining research method, analysis and findings with whole group deliberative discussions, inviting questions from public contributors |
| Year(s) Of Engagement Activity | 2023 |
| Description | PPI Workshop considering use of GP data in project research |
| 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 | Workshop discussing the patient perspective on questions around the different ways that a person might use primary care after Covid. Researchers presented plans and group discussed the strengths and weaknesses of using GP "fit notes" or "sick notes" as a means to measure the scale of the continuing public health and economic burden for those recovering from COVID-19. Asking questions: Do you think this is a good approach? Would it miss important information or important groups of people? How might we deal with this? Outcome- Research workplan refined |
| Year(s) Of Engagement Activity | 2022 |
| Description | PPI Workshop on Symptom Clustering Work |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Public contributor input into Public Infographic via remote input and discussion at workshop |
| Year(s) Of Engagement Activity | 2023 |
| Description | PPIE Engagement via online discussion forum - the 'Discourse' platform |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Online discussion forum created, promotion of forum topics focused on gathering views on Long COVID definition Outcome- Validating the use of an adapted definition of Long COVID |
| Year(s) Of Engagement Activity | 2022 |
| Description | PPIE Long Covid defintion(s) workshop |
| 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 | Reviewing existing Long Covid definitons, considering strengths and weaknesses. Developing insights into ensuring fit for purpose definition. Outcome=Endorsement of Delphi definition produced outside of the project |
| Year(s) Of Engagement Activity | 2022 |
| Description | PPIE Website development input (remote and via workshop) |
| 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 | Draft website plan and live draft-website emailed to participants with invitation to comment and suggest edits. Discussion in workshop supporting engagement. Outcome-Website plan changed based on public contributor perspective |
| Year(s) Of Engagement Activity | 2022 |
| Description | PPIE plan development discussion in workshop |
| 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 | Review of research project plan and co-design of PPI activities. Outcome- Refined PPIE plan |
| Year(s) Of Engagement Activity | 2021,2022 |
| Description | PPIE-Research participant communications materials refinement |
| 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 | Public contributor input into communications materials used within the research project: Device explainer video; Input into Clinic access video - used to orientate research subjects Outcome- Adapted communications materials for research subjects based on patient and public contributor input |
| Year(s) Of Engagement Activity | 2022 |
| Description | Patient Group Workshop- addressing clinic data |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Workshop addressing clinic data analysis. Presentations from researchers outlining analysis questions with whole group deliberative discussions, inviting questions from public contributors. Public contributors emphasised the need for data analysis and questions to be geared towards finding effective ways to support people with long-COVID |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation: Annual Conference of the Society for Social Medicine 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual Conference of the Society for Social Medicine 2021 M Green: Mental health inequalities in disruptions to healthcare, economic activity and housing during COVID-19: findings from 12 UK longitudinal population surveys |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the European Public Health Association 2021: Health Behaviours and the UK furlough scheme: Evidence from Eight Longitudinal Population Surveys |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the European Public Health Association 2021: Workshop: Informing COVID-19 responses with longitudinal studies: demonstrating harmonised data infrastructure Chaired by SV Katikireddi & T Lallukka M Green: Health Behaviours and the UK furlough scheme: Evidence from Eight Longitudinal Population Surveys |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the European Public Health Association 2021: Health care disruption inequalities during Covid-19: Evidence from eleven longitudinal studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the European Public Health Association 2021: Workshop: Informing COVID-19 responses with longitudinal studies: demonstrating harmonised data infrastructure Chaired by SV Katikireddi & T Lallukka Included following 3 presentations: J Maddock: Health care disruption inequalities during Covid-19: Evidence from eleven longitudinal studies |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the European Public Health Association 2021: Mental health inequalities in disruptions across multiple domains during COVID -19: an investigation in 12 population-based longitudinal studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the European Public Health Association 2021: Workshop: Informing COVID-19 responses with longitudinal studies: demonstrating harmonised data infrastructure Chaired by SV Katikireddi & T Lallukka E McElroy: Mental health inequalities in disruptions across multiple domains during COVID -19: an investigation in 12 population-based longitudinal studies |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Inequalities in health care disruptions during Covid-19 in the UK: Evidence from eleven longitudinal studies. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Symposium: One question, a dozen studies: co-ordinated analyses of health inequalities during COVID-19 from multiple UK longitudinal surveys Chaired by P Patalay Included the following presentation: J Maddock: Inequalities in health care disruptions during Covid-19 in the UK: Evidence from eleven longitudinal studies. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Smoking, vaping, drinking and the UK furlough scheme: evidence from eight longitudinal population surveys |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Symposium: One question, a dozen studies: co-ordinated analyses of health inequalities during COVID-19 from multiple UK longitudinal surveys Chaired by P Patalay Included the following presentation: M Green: Smoking, vaping, drinking and the UK furlough scheme: evidence from eight longitudinal population surveys |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Annual conference of the Society for Longitudinal and Lifecourse Research 2021: The UK furlough scheme and diet, physical activity, and sleep during the COVID-19 pandemic in the UK: evidence from eight longitudinal studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Symposium: One question, a dozen studies: co-ordinated analyses of health inequalities during COVID-19 from multiple UK longitudinal surveys Chaired by P Patalay Included the following presentation: B Wielgoszewska: The UK furlough scheme and diet, physical activity, and sleep during the COVID-19 pandemic in the UK: evidence from eight longitudinal studies |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: CLOSER Conference 2022: Impact |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | C,park: Impact of the COVID-19 Longitudinal Health and Wellbeing National Core Study 2021: 18-01-2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation: CLOSER Conference 2022: Serology |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A.Wong presented an overview of the Serology work at the CLOSER conference on 19-1-2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation: MQ Mental Health Data Science Meeting: Mental Health findings from the LH&W NCS |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | MQ Mental Health Data Science Meeting: Mental Health findings from the LH&W NCS |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation: Mental health inequalities in healthcare, economic, and housing disruption during COVID -19: an investigation in 12 population-based longitudinal studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual conference of the Society for Longitudinal and Lifecourse Research 2021: Symposium: One question, a dozen studies: co-ordinated analyses of health inequalities during COVID-19 from multiple UK longitudinal surveys Chaired by P Patalay Included the following presentation: J Maddock: Inequalities in health care disruptions during Covid-19 in the UK: Evidence from eleven longitudinal studies. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Press release |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Press release accompanying a presentation given at the EASD conference 2022 in Stockholm. The press released was distributed via EurekAlert! and was picked up by a few media outlets such as Business Insider India, Express and Pharmacy Times. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.eurekalert.org/news-releases/964905 |
| Description | Public communications materials development |
| 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 | Public contributor input into public communications materials: Convalescence explainer video; Infographic Outcome- Adapted public facing communications materials based on patient and public contributor input |
| Year(s) Of Engagement Activity | 2022 |
| Description | RCPE: COVID-19 outcomes based on ethnicity and gender |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited talk as part of Royal College of Physicians of Edinburgh (RCPE) CPD event to educate health professionals about ethnicity and COVID-19. Talk recorded and made available to RCPE members via their CPD service. |
| Year(s) Of Engagement Activity | 2022 |
| 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 | 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 | School talk for British Science Week |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Schools |
| Results and Impact | For British Science Week 2023, Dr Chloe Park visited Kings Court First School in Old Windsor to talk to 5-9 year old about being a scientist. |
| Year(s) Of Engagement Activity | 2023 |
| 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 | 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 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 1 of the UK LLC website. This also involved input from the wider UK LLC team and public contributors. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://ukllc.ac.uk/ |
| 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 | 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 | Wellcome 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 presented a poster giving an overview of UK LLC. |
| Year(s) Of Engagement Activity | 2021 |
| Description | What lessons can we learn from furlough for managing future social shocks? |
| 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 | IPPO Blog What lessons can we learn from furlough for managing future social shocks? MAY 5, 2022 Members of the research team for the COVID-19 Longitudinal Health and Wellbeing National Core Study at University College London say that furlough was useful in protecting mental health, but not without its drawbacks. Dr Charlotte Booth, Dr Bozena Wielgoszewska, and Dr Wels Jacques |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://theippo.co.uk/what-lessons-can-we-learn-from-furlough-for-managing-future-social-shocks/ |
| Description | Workshop with Public Advisory Group and researchers focused on Symptom cluster analysis (Quant) |
| 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 | Quantitative research presented methodology and symptom cluster analysis Output- Input into research output, validation of analysis and refined communications plan |
| Year(s) Of Engagement Activity | 2022 |