Characterisation, determinants, mechanisms and consequences of the long-term effects of COVID-19: providing the evidence base for health care

Lead Research Organisation: University College London
Department Name: UNLISTED

Abstract

We will address the following patient defined questions: What is long-COVID and how is it diagnosed? Why have I got long-COVID? What effects will long-COVID have on my health, ability to work and family? What are my chances of recovery? How will this research ensure I am getting the right treatment and support for long-COVID?
Physical and mental health consequences of C-19 infection, termed long-COVID, occur frequently. Our understanding of long-COVID, including how best to diagnose, risk factors, health and economic consequences, is poor, limiting efforts to help people. We will use a combination of national anonymised linked primary care electronic health records, and longitudinal studies of people of all ages across the country. We have asked participants about C-19 infections, long-COVID symptoms, and have collected health and socioeconomic information for many years before the pandemic. From these studies, we will ask people reporting long-COVID, and comparator groups, to wear a wrist band measuring exercise ability, breathing, and heart rate, and complete online questionnaires on mental health and cognitive function. They will also be invited to clinic for non-invasive imaging to look at potential damage to vital organs, such as the brain, lungs and heart. Patients, members of the public overseeing electronic health record research, and study members have been involved in shaping the research questions, and will be consulted for the duration of the project. In addition, people with long-COVID and their families, from the studies, will be involved in shaping the diagnostic tools for long-COVID, and aiding our understanding of determinants of recovery, and responses to therapy. We will share findings with bodies involved in guidelines (NICE, who are also part of this project), with government (via the publications).

Technical Summary

This COVID-19 Long COVID award is jointly funded (50:50) between UKRI/Medical Research Council and the National Institute for Health Research. The figure displayed is the UKRI/MRC amount only, each partner is contributing equally towards the project so the Total Fund Amount is £9,593,946.

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 will address the following questions: 1. How do we define and diagnose the sub-phenotypes of long-COVID? 2. What are the predictors of long-COVID, and what are the mechanisms of the sub-phenotypes? 3. What are the long-term health (physical and mental), and socioeconomic consequences? What factors enhance recovery? 4. What is the level of GP adherence to NICE diagnosis and management guidelines? Can a pop-up tool in medical records enhance adherence? 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. Questionnaires will identify long-COVID cases across cohorts. A subgroup of 200 cases will be matched to three sets of controls (C-19 +, long-COVID-), (C-19-, long-COVID+), and (C-19-, long-COVID-). They will wear a device capturing exercise capacity, heart rate and respiration, and complete regular online questionnaires on mental health and cognition. They will attend clinic for imaging to assess target organ damage. Qualitative work with people with long-COVID will inform diagnostic criteria and understanding of the lived experience. 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.

People

ORCID iD

Publications

10 25 50

 
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 CONVALESCENCE Study Participant Information Video 
Description This video walks participants through their clinic visit for the long COVID Convalescence Study. 
Type Of Art Film/Video/Animation 
Year Produced 2021 
Impact Study Participants have benefitted from knowing what will happen at the clinic. 
URL https://youtu.be/J0ED-67_sRE
 
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...
 
Description COVID-19 Recovery Committee
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
URL https://www.parliament.scot/chamber-and-committees/committees/current-and-previous-committees/sessio...
 
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 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 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 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.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 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 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.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 Long COVID mental health support leaflet (both in English and Japanese)
Geographic Reach Multiple continents/international 
Policy Influence Type Contribution to new or Improved professional practice
Impact These Long COVID mental health information packages are expected to improve both patients' and healthcare professionals' knowledge about how to better acknowledge and address various mental health challenges alongside living with Long COVID and subsequent issues. A range of healthcare providers, Long COVID specialist clinics and local wellbeing services in the UK and Japan have shown interest in disseminating the documents. We envisage that the information assembled by our research team can have a significant impact on mental health practice within these organisations and also beyond in wider society.
 
Description National GP Alert
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact On behalf of NHS England, we conducted a population-based cohort study investigating the association between warfarin and COVID-19 outcomes compared with direct oral anticoagulants (DOACs). We used the OpenSAFELY platform to analyse primary care data and pseudonymously linked SARS-CoV-2 antigen testing data, hospital admissions and death records from England. We found that during lockdown, some individuals were inappropriately switched from warfarin to DOACs, this led to a national alert to GPs.
URL https://dx.doi.org/10.1186%2Fs13045-021-01185-0
 
Description OpenSAFELY report of coverage
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
URL https://reports.opensafely.org/reports/antivirals-and-nmabs-for-non-hospitalised-covid-19-patients-c...
 
Description Short Report on Long COVID - SAGE REPORT
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
Impact This report highlighted what we know about long COVID and where further work is required. Sir Patrick Vallance described the report as the "most comprehensive view to date" on Long COVID. It was very well received at SAGE and passed onto the European counterparts. It was widely disseminated on social media.
URL https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1007...
 
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 £5,203,856 (GBP)
Funding ID MC_PC_20030 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 10/2020 
End 03/2021
 
Description Phase 1 COVID-19 Longitudinal Health and Wellbeing - National Core Study
Amount £9,073,781 (GBP)
Funding ID MC_PC_20059 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 04/2021 
End 09/2022
 
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 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 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 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 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 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
 
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 CLOSER 
Organisation University College London
Department Institute of Education (IOE)
Country United Kingdom 
Sector Academic/University 
PI Contribution Leading on work packages and the teaching aspect of CLOSER. This includes data analysis, preparing and commenting on manuscripts, organising workshops, seminars and conferences. Members of the executive group and CLOSER communications network.
Collaborator Contribution CLOSER (Cohort & Longitudinal Studies Enhancement Resources) aims to maximise their use, value and impact both at home and abroad. Bringing together eight leading studies, the British Library and the UK Data Service, CLOSER works to stimulate interdisciplinary research, develop shared resources, provide training, and share expertise. In this way CLOSER is helping to build the body of knowledge on how life in the UK is changing - both across generations and in comparison to the rest of the world.
Impact Johnson 2017 PMID:28072856 Bann 2017 PMID: 28072856 2 successful bids to the innovation fund 2 successful bids to the innovation fund Bann, D, Johnson, W, Li, L, Kuh, D, Hardy, R. Socioeconomic inequalities in body mass index, weight, and height in childhood and adolescence: coordinated analyses of individual participant data from four British birth cohort studies initiated in 1946, 1958, 1970, and 2000/1. Lancet Public Health 2018 Apr;3(4):e194-e203. doi: 10.1016/S2468-2667(18)30045-8. Epub 2018 Mar 21.
Start Year 2012
 
Description CLOSER 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution N/A yet
Collaborator Contribution N/A yet
Impact N/A yet
Start Year 2022
 
Description KCL 
Organisation King's College London
Country United Kingdom 
Sector Academic/University 
PI Contribution As described under other output headings
Collaborator Contribution As described under other output headings
Impact As described under other output headings
Start Year 2020
 
Description LSHTM 
Organisation London School of Hygiene and Tropical Medicine (LSHTM)
Country United Kingdom 
Sector Academic/University 
PI Contribution As described under other output headings
Collaborator Contribution As described under other output headings
Impact As described under other output headings
Start Year 2020
 
Description MRC Integrative Epidemiology Unit 
Organisation University of Bristol
Department MRC Integrative Epidemiology Unit
Country United Kingdom 
Sector Academic/University 
PI Contribution MRC Integrative Epidemiology Unit, University of Bristol- Colleagues at The MRC Integrative Epidemiology Unit are developing novel techniques for the analysis of epigenetic data and have performed epigenetic analyses using SABRE blood samples to study DNA methylation in association with smoking and blood pressure.
Collaborator Contribution MRC Integrative Epidemiology Unit, University of Bristol- Colleagues at The MRC Integrative Epidemiology Unit are developing novel techniques for the analysis of epigenetic data and have performed epigenetic analyses using SABRE blood samples to study DNA methylation in association with smoking and blood pressure.
Impact Nabila Kazmi, Hannah R. Elliott, Kim Burrows, Therese Tillin, Alun D. Hughes, Nish Chaturvedi, Tom R. Gaunt, Caroline L. Relton. Associations between high blood pressure and DNA methylation. PLoS One. 2020; 15(1): e0227728. Published online 2020 Jan 30. doi: 10.1371/journal.pone.0227728. PMCID: PMC6991984
Start Year 2013
 
Description MRC Lifecourse Epidemiology Unit 
Organisation University of Southampton
Department MRC Lifecourse Epidemiology Unit
Country United Kingdom 
Sector Academic/University 
PI Contribution MRC Lifecourse Epidemiology Unit, University of Southampton- this group, with a key interest in chronic musculoskeletal disorders, is working closely with us, studying SABRE DEXA data from visit 3 to gain insights into ethnic differences in bone health in older age.
Collaborator Contribution MRC Lifecourse Epidemiology Unit, University of Southampton- this group, with a key interest in chronic musculoskeletal disorders, is working closely with us, studying SABRE DEXA data from visit 3 to gain insights into ethnic differences in bone health in older age.
Impact None to date
Start Year 2019
 
Description NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE 
Organisation National Institute for Health and Care Excellence (NICE)
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 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 Oxford 
Organisation University of Oxford
Country United Kingdom 
Sector Academic/University 
PI Contribution As described under other output headings
Collaborator Contribution As described under other output headings
Impact As described under other output headings
Start Year 2020
 
Description University of York 
Organisation University of York
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
 
Title RADAR-base Data Collection Instruments 
Description Components of RADAR-base for data collection in a Remote Monitoring Study using the RADAR-base platform. 
Type Of Technology Webtool/Application 
Year Produced 2023 
Open Source License? Yes  
Impact Software and data collection instruments and wearable devices are required to perform the remote monitoring part of the research study. 
URL https://radar-base.org/
 
Description "I am only half left" - a qualitative exploration of Long COVID patients' existential loss and its impact on their identity, presented on BSA 2022 Medical Sociology Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Over 200 researchers and practitioners attended this BSA MedSoc conference in September 2022. This presentation was part of a session focusing on Long COVID. Attendees included health researchers and practitioners. Discussions focused on how to better understand the complex and far-reaching impacts of Long COVID so that more holistic support can be developed. This presentation also opened doors for future collaborations with other like-minded researchers.
Year(s) Of Engagement Activity 2022
URL https://www.britsoc.co.uk/media/25915/medsoc22_day3final_abstract_book.pdf
 
Description "Neglected": Exploring patients' experiences of Long Covid and accessing healthcare services taking an intersectional approach, presented on the BSa 2022 Medical Sociology Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Over 200 researchers and practitioners attended this BSA MedSoc conference in September 2022. This presentation was part of a session focusing on Long COVID. Attendees reported that their own research and practical experiences have resonated with our findings. This resolution further sparked discussions on how to further collaborate to better address healthcare access issues in a more coordinated manner. This presentation also opened doors for future collaborations with other like-minded researchers.
Year(s) Of Engagement Activity 2022
URL https://www.britsoc.co.uk/media/25915/medsoc22_day3final_abstract_book.pdf
 
Description Anika Knuppel presentation at Royal Statistical Society 2022 International Conference - Sep 2022 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Academic conference presentation
Year(s) Of Engagement Activity 2022
URL https://rss.org.uk/training-events/conference2022/
 
Description Anika Knuppel conference presentation at EASD conference 2022 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation on findings of research addressing cardiometabolic risk factors in relation to long COVID to an international academic conference focused on diabetes.
Year(s) Of Engagement Activity 2022
URL https://www.easd.org/annual-meeting/easd-2022.html
 
Description At the Intersections Conference Presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Audience: Academic - scholars of race, ethnicity, gender, disability and intersectionality attended.
What we did: Sarah Baz presented at the At the Intersections ECR conference and networked with other ECRs including former CODE Manchester employee who worked on a national survey on Covid. Presented findings on barriers to accessing healthcare amongst people with Long Covid in Bradford.
Outcome: Feedback on project and networking.
Year(s) Of Engagement Activity 2022
URL https://www.eventbrite.co.uk/e/at-the-intersections-conference-2022-tickets-316660880217?utm_source=...
 
Description BBC Points West Interview 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact BBC Points West Broadcast on our study of long COVID, with a particular focus on participants drawn from the Avon Longitudinal Study of Parents and Children (ALSPAC/Children of the Nineties), also reported on BBC website.
Year(s) Of Engagement Activity 2022
URL https://www.bbc.co.uk/news/uk-england-bristol-61421059
 
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: Over 100 participants have been enrolled to take part in the Convalescence Deep Phenotyping Clinic! 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact Update of the CONVALESCENCE Long COVID Deep Phenotyping Clinic. The purpose was to update various audiences on the clinic reaching the 100 milestone, and explain why the clinic is important.
Year(s) Of Engagement Activity 2021
URL https://blogs.ucl.ac.uk/covid19-lhw/2021/12/09/convalescence-study-recruits-over-100-participants/
 
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 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 Cohorts Survey PPI review and co-design input 
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 survey questions emailed to participants with invitation to comment and suggest edits. Discussion in workshop supporting engagement, Survey draft changed based on public contributor input. Including questions edited and added
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 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 Government Cabinet Meeting on Long COVID 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact The Project Lead (Professor Nishi Chaturvedi) reported our qualitative findings on healthcare inaccessibility in her presentation at a Government Cabinet Office meeting on Long COVID.
Year(s) Of Engagement Activity 2022
 
Description HDRUK COVID-19 National Core Studies Symposium 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact The virtual COVID-19 National Core Studies Symposium event presented progress on the COVID-19 National
Core Studies Programme - a programme established by the UK Government, UKRI, NIHR and the Health and
Safety Executive in October 2020 to accelerate the country's research response into COVID-19 by bringing
together UK-wide expertise at pace and at scale.
The study leaders, senior academics, policy makers and front-line research scientists who contributed to
the online event addressed issues including future pandemic preparedness, vital research infrastructures,
the importance of public engagement, the interface between science and society and the importance to
demonstrate trustworthiness.
The COVID-19 National Core Studies Symposium was attended by ~500 people from 26 countries,
the symposium attracted patients, members of the public and colleagues from government, academia,
industry, NHS, charities, and the media.
Year(s) Of Engagement Activity 2021
URL https://www.hdruk.ac.uk/wp-content/uploads/2021/07/COVID-19-National-Core-Studies-Summary-Report-14....
 
Description 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 K Taylor Presentation at Royal Statistical Society 2022 International Conference - Sep 2022 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Kurt Taylor presented 'The risk of incidence diabetes following SARS-CoV-2 infection in unvaccinated and vaccinated populations: A cohort study of up to eighteen million people' at Royal Statistical Society 2022 International Conference.
Year(s) Of Engagement Activity 2022
URL https://virtual.oxfordabstracts.com/#/event/2726/submission/189
 
Description 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 Long COVID healthcare access in Bradford, presented on 31 August 2022 in the Bradford Post Covid Equity of Access meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Policymakers/politicians
Results and Impact Findings on healthcare access issues and inequalities were presented to a group of 30 attendees, including Bradford Council members and local healthcare professionals and managers. Attendees acknowledged the gaps in supporting Long COVID patients in local areas of Bradford. The discussion also paid close attention to inequalities in light of our findings that people from socio-economically disadvantaged and ethnic minority backgrounds could face compounded barriers in accessing healthcare. We further discussed how to address these inequality gaps in future practice development.
Year(s) Of Engagement Activity 2022
 
Description Long COVID healthcare access issues, presented on 4th July 2022 in the ost Covid Regional Clinical Network -Clinical Policy Unit Medical Directorate NHS England and NHS Improvement 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact We presented barriers to accessing healthcare findings to an audience of 70+ people working in the NHS and specialists in providing Long Covid support. The presentation was overall very well received and gave us much to think about in relation to this finding and developing publications e.g. the terms that we use - such as 'treatment for LC'. The lead for the LC clinic in Bradford was very impressed by the presentation, the demographics of our participants matched their demographics/Bradford population and the people that are particularly facing barriers in accessing healthcare. We have been invited to present/discuss this finding at a Bradford and Districts Long Covid Equality group meeting in August.
Year(s) Of Engagement Activity 2022
 
Description Long COVID: an unfolding story with Professor Brian Cox | The Royal Society- 
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 Public/other audiences
Results and Impact This event was part of a series of Royal Society events discussing the scientific response to the COVID-19 pandemic. Hosted by Professor Brian Cox, the Royal Society's Professor for Public Engagement in Science, who was be joined by: Professor Nishi Chaturvedi, MRC Unit for Lifelong Health & Ageing, University College London
Year(s) Of Engagement Activity 2021
URL https://royalsociety.org/science-events-and-lectures/2021/04/long-covid/?_cldee=YmluZ2VsdEBnbWFpbC5j...
 
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 NIHR EDI Website - Reaching Underserved Communities Case Study 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Online audience - community and academics.
What we did: Case study on involving underserved communities in health research - lessons and tips about involving ethnic minorities and people from deprived backgrounds in research. Based on reflections from recruitment and interviewing for the Qualitative Longe Covid Study.
Outcome: Awaiting response and for case study to be featured on website - NIHR EDI leads have said they will feature on the NIHR EDI case studies website.
Year(s) Of Engagement Activity 2022
 
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 Our research on the barriers people with Long Covid face in accessing health services featured in The Week 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Our research on the barriers people with Long Covid face in accessing health services featured in The Week. This was based on our article in The Conversation and academic article in the Health Expectations article. Not known how many people this reached but is an online piece so estimating a wide reach. Promotes our research and raises more awareness of Long Covid and healthcare access barriers.
Year(s) Of Engagement Activity 2023
URL https://www.theweek.in/news/health/2023/01/11/long-covid--here-s-what-it-s-like-trying-to-access-hea...
 
Description PAG (Patient Advisory Group) Involvement workshops 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Three workshops were organised between 2021-22 to engage with the Long COVID Patient Advisory Group (PAG), and to seek advice and feedback on our wave 1 interview topic guide and initial research findings.
Year(s) Of Engagement Activity 2021,2022
 
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 at the UCL Institute of Healthcare Engineering ECR Symposium. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Alexandra Jamieson presented a talk titled "A validation study of two wrist-worn wearable devices for remote assessment of exercise capacity" at the UCL Institute of Healthcare Engineering ECR Symposium. This was based on the work she has been conducting with Dr Michele Orini.
Year(s) Of Engagement Activity 2021
 
Description Presentation of initial qualitative Long COVID research findings to NICE 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Initial findings from our first wave of interviews with Long COVID patients were presented to NICE and other Long COVID researchers. The presentation focused on the healthcare access issues facing Long Covid patients across the UK.
Year(s) Of Engagement Activity 2022
 
Description Presentation on healthcare access barriers to NHS England 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Findings on healthcare access barriers were presented and discussed at a meeting with NHS England
Year(s) Of Engagement Activity 2022
 
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: Cabinet Office Long Covid Teach In 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Teach In
Year(s) Of Engagement Activity 2022
 
Description Presentation: Convalescence Study Update to NHSEI 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact C.park and V.Walker presented an overview of the convalescence study to the NHSEI long Covid Taskforce on March 2nd.
Year(s) Of Engagement Activity 2022
 
Description Presentation: NIHR Long COVID Funding Event 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Overview of Convalescence by A.Carnemolla at the NIHR Long COVID Funding Event on 1-11-2021
Year(s) Of Engagement Activity 2021
 
Description Presentation: NIHR Long COVID: National Landscape Webinar 
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: Overview of the Convalescence Study at the NIHR Long COVID: National Landscape Webinar

CRN North Thames hosted this first national Long COVID webinar to bring together research on Long COVID and enable a platform whereby prominent multi-centre studies can be discussed with any preliminary data shared.
The event, on 16 February, brought together those from all over the UK and further afield with a keen interest in the condition, be they researchers, patients, or in some cases, both. At its peak, the event had more than 500 attendees.

During the two-hour session, researchers presented details and early findings from Long-COVID studies, including PHOSP-COVID, CONVALESCENCE and the CLoCK study; as well as HEAL-COVID, the UK's only national trial that aims to identify treatments beneficial to patients discharged from hospital. Upcoming research studies including STIMULATE ICP were also featured, as was a local community perspective of dealing with Long-COVID.
Year(s) Of Engagement Activity 2022
URL https://local.nihr.ac.uk/news/hundreds-tune-in-to-hear-about-latest-long-covid-trials/30102
 
Description Presentations of qualitative Long COVID research findings at the COVID-19 Longitudinal Health and Wellbeing National Core Study and CONVALESCENCE Study Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Two presentations were conducted focusing on the following two subjects: a) the impact of Long-Covid on identity and sense of self; b) Findings from the first wave of the CONVALSCENCE qualitative study: Healthcare care access difficulties for people living with Long Covid. The findings were well received by over 100 audiences both in-person and online. The presentations resonated with findings presented by other delegates from various research projects. The discussions highlighted the complex impact of Long COVID and the existing gaps to support people with Long COVID both in healthcare and everyday lives more generation.
Year(s) Of Engagement Activity 2022
 
Description Presenting initial findings to Bradford City Council Public Health team 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact What we did: Presentation and discussion with Bradford City Council Public Health team, local long covid healthcare professionals and third sector charity to introduce the qualitative Long Covid study and initial findings on access to healthcare and physical activity.
Outcome: Facilitated future discussions with public health team in the council. Potentially help shape local and regional services for LC in the future.
Year(s) Of Engagement Activity 2022
 
Description Press coverage for Antibody Levels following SARS-CoV-2 vaccination report & interview on BBC Points West evening news 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Media (as a channel to the public)
Results and Impact Coverage of publication on antibody levels following SARS-CoV-2 vaccination, including interview with a corresponding author, Nic Timpson, from ALSPAC cohort.
Year(s) Of Engagement Activity 2023
URL https://www.bbc.co.uk/news/uk-england-bristol-64392784
 
Description Press release 
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 Press release for Antibody levels following SARS-CoV-2 vaccination publication 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Purpose to inform general public of results from latest publication.
Year(s) Of Engagement Activity 2023
URL https://www.kcl.ac.uk/news/how-much-of-a-boost-do-booster-covid-19-jabs-give-1
 
Description 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 Published in The Conversation - Long COVID: here's what it's like trying to access healthcare for the condition 
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 Qualitative work package Published in The Conversation - Long COVID: here's what it's like trying to access healthcare for the condition. This was based on findings from the first stage of our study and our academic article in Health Expectations Journal.
Year(s) Of Engagement Activity 2023
URL https://theconversation.com/long-covid-heres-what-its-like-trying-to-access-healthcare-for-the-condi...
 
Description Qualitative Long Covid Network for academics and researchers 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact audience: academics, qualitative long covid researchers, health professionals involved in research.
what we did: Sarah Baz (University of York) and Chao Fang (UCL) (both research fellows for the qualitative component of the wider project) co-convene the qualitative long covid network and have till date organised 2 workshops where different research teams in UK and international universities have been able to present their current qualitative research into Long Covid. They are now organising another workshop for Autumn 2022. Alongside other collegues (Roz Shafran, Laura Sheard, JD Carpentieri, Fiona Newlands and others) they are currently writing a short research article which will summarise the current qualitative research on Long Covid taking place in the UK. This paper will involve collaboration with all of the teams involved in the network and will map out all the high quality studies currently taking place.
Outcome: Develop networks and future collaborations. Develop a new publication to be submitted to a top health focused journal. Exchange knowledge,
Year(s) Of Engagement Activity 2021,2022
 
Description R Denholm & G Cezard Presentation at Royal Statistical Society 2022 International Conference - Sep 2022 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Rachel Denholm and Genevieve Cezard presented 'Big data during the COVID-19 pandemic' at Royal Statistical Society 2022 International Conference.
Year(s) Of Engagement Activity 2022
URL https://virtual.oxfordabstracts.com/#/event/2726/submission/304
 
Description R Denholm (on behalf of R Knight) Presentation at Royal Statistical Society 2022 International Conference - Sep 2022 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Rachel Denholm presented 'Association of COVID-19 with arterial and venous vascular diseases: a population-wide cohort study of 48 million adults in England and Wales' on behalf of Rochelle Knight at the Royal Statistical Society 2022 International Conference.
Year(s) Of Engagement Activity 2022
URL https://virtual.oxfordabstracts.com/#/event/2726/submission/63
 
Description Report in The Conversation news site about Antibody levels following SARS-CoV-2 vaccination publication 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Invited to write a news story about the recent publication. News story page has been viewed several thousand times across several countries around the world. Comments and discussion was had on the news story comments section. Following publication we were contacted by journalists with questions about the publication.
Year(s) Of Engagement Activity 2023
URL https://theconversation.com/covid-booster-vaccines-how-a-third-dose-may-help-vulnerable-people-level...
 
Description 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 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 Times article 
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 Public/other audiences
Results and Impact Interview and article arising in the Times newspaper about our work on long COVID.
Year(s) Of Engagement Activity 2022
URL https://www.thetimes.co.uk/article/twins-help-solve-long-covid-mystery-nr268jpw0
 
Description V Walker Presentation at HDR UK SouthWest Regional Meeting Sep 2022 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Venexia Walker presented 'Coronavirus post-acute long-term effects: constructing an evidence base' at the HDR UK SW Regional Meeting on 21/09/2022
Year(s) Of Engagement Activity 2022
 
Description 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 Westminster Health Forum Keynote Seminar: Priorities for Long Covid services, care and research, Tuesday, 31 January 2023 Presentation given on Long Covid and barriers to accessing healthcare support 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Westminster Health Forum Keynote Seminar: Priorities for Long Covid services, care and research, Tuesday, 31 January 2023
A presentation given on Long Covid and barriers to accessing healthcare support at this event. It was attended by academics, policy makers, MPs, patients, amongst other people. It was a 5 minute presentation followed by a panel Q and A.
Year(s) Of Engagement Activity 2023
 
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