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).
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.
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.
Organisations
- UNIVERSITY COLLEGE LONDON (Collaboration, Lead Research Organisation)
- UNIVERSITY OF BRISTOL (Collaboration)
- University of Southampton (Collaboration)
- British Heart Foundation (BHF) (Collaboration)
- University of Edinburgh (Collaboration)
- National Institute for Health and Care Excellence (NICE) (Collaboration)
- UNIVERSITY OF GLASGOW (Collaboration)
- University of Oxford (Collaboration)
- London School of Hygiene and Tropical Medicine (LSHTM) (Collaboration)
- University of Cambridge (Collaboration)
- BRADFORD TEACHING HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- University of York (Collaboration)
- KING'S COLLEGE LONDON (Collaboration)
Publications
Markovic A
(2024)
Physiological Response to the COVID-19 Vaccine: Insights From a Prospective, Randomized, Single-Blinded, Crossover Trial.
in Journal of medical Internet research
Mhereeg M
(2023)
COVID-19 vaccination in pregnancy: the impact of multimorbidity and smoking status on vaccine hesitancy, a cohort study of 25,111 women in Wales, UK.
in BMC infectious diseases
Mhereeg M
(2022)
COVID-19 vaccination in pregnancy: views and vaccination uptake rates in pregnancy, a mixed methods analysis from SAIL and the Born-In-Wales Birth Cohort.
in BMC infectious diseases
| 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... |
| Title | Short Animation Series |
| Description | Short Animation series showing the results of the LH&W Core study. Animations subjects include: Impact, Mental Health, Long COVID, Furlough, Healthcare Disruption, Vaccination and Treatment. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2023 |
| Impact | These animations will help to share the findings of the study widely to reach different stakeholders including policymakers and the public. |
| URL | https://www.ucl.ac.uk/covid-19-longitudinal-health-wellbeing/short-animation-series |
| 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 | 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 | Future use of Whole-Population Electronic Health Records for Research |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or improved professional practice |
| 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 Core Studies COVID-19 response: Objectives, Impacts, and Legacy |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | This document informs on the key areas of 3 of the National Core Studies |
| URL | https://www.ukri.org/wp-content/uploads/2023/07/MRC-05072023-National-Core-Studies-Objectives-Impact... |
| Description | National GP Alert |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | On behalf of NHS England, we conducted a population-based cohort study investigating the association between warfarin and COVID-19 outcomes compared with direct oral anticoagulants (DOACs). We used the OpenSAFELY platform to analyse primary care data and pseudonymously linked SARS-CoV-2 antigen testing data, hospital admissions and death records from England. We found that during lockdown, some individuals were inappropriately switched from warfarin to DOACs, this led to a national alert to GPs. |
| URL | https://dx.doi.org/10.1186%2Fs13045-021-01185-0 |
| Description | OpenSAFELY report of coverage |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | https://reports.opensafely.org/reports/antivirals-and-nmabs-for-non-hospitalised-covid-19-patients-c... |
| Description | 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 | Updated policy brief for CMO |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | An adaptive, mixed methods, longitudinal study of the impact of COVID-19 on health inequalities in families living in Bradford. |
| Amount | £198,680 (GBP) |
| Organisation | Health Foundation |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 02/2021 |
| End | 01/2022 |
| Description | 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 | 09/2020 |
| End | 03/2021 |
| Description | COVID-19 survivors and kidney disease: The long term effects on kidney function, and health outcomes for people with pre-existing chronic kidney disease - a study using electronic health records |
| Amount | £499,740 (GBP) |
| Funding ID | NIHR301535 |
| Organisation | Trainees Coordinating Centre (TCC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2021 |
| End | 07/2024 |
| Description | Concomitant primary prevention of multiple chronic diseases through data-driven approaches mobilising population-wide longitudinal health records |
| Amount | £2,000,000 (GBP) |
| Funding ID | NIHR303137 |
| Organisation | National Institute for Health and Care Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2023 |
| End | 12/2028 |
| Description | Efficient AI tools for equitable handling of missing values in population-wide e-health records to advance prevention of chronic diseases |
| Amount | £618,984 (GBP) |
| Funding ID | EP/Y017757/1 |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 04/2025 |
| Description | Harmony: A global platform for contextual harmonization, translation and cooperation in mental health research |
| Amount | £40,000 (GBP) |
| Funding ID | 226697/Z/22/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2022 |
| End | 05/2024 |
| Description | Impact of COVID-19 on the association between Type 2 diabetes and incidence of cardiovascular diseases |
| Amount | £50,000 (GBP) |
| Funding ID | HDRUK2023.0242 |
| Organisation | Health Data Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 04/2024 |
| Description | Institutional Research Leave Award |
| Amount | £25,000 (GBP) |
| Organisation | University of Aberdeen |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/2024 |
| End | 06/2024 |
| Description | Optimisation of natural language processing for real-time structured clinical data capture in electronic health records |
| Amount | £605,054 (GBP) |
| Funding ID | EP/Y018087/1 |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 04/2025 |
| Description | 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 | 03/2021 |
| End | 09/2022 |
| Description | Risk prediction in pancreatic cancer using routine NHS data |
| Amount | £40,000 (GBP) |
| Organisation | National Physical Laboratory |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 03/2024 |
| End | 03/2025 |
| Description | Supporting Young Bradford |
| Amount | £161,351 (GBP) |
| Organisation | Health Foundation |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2022 |
| End | 04/2024 |
| Description | The first England-wide study of pregnant women with pre-existing heart disease: the impact of Covid-19 diagnosis and vaccination |
| Amount | £50,000 (GBP) |
| Organisation | British Heart Foundation (BHF) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2023 |
| End | 08/2024 |
| Description | The first England-wide study of pregnant women with pre-existing heart disease: the impact of Covid-19 diagnosis and vaccination |
| Amount | £50,000 (GBP) |
| Funding ID | HDRUK2023.0239 |
| Organisation | Health Data Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 04/2024 |
| Description | The risk of stroke after SARS-CoV-2 in a UK population-wide cohort |
| Amount | £60,000 (GBP) |
| Funding ID | SA_CV_20/100018 |
| Organisation | Stroke Association |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2021 |
| End | 03/2022 |
| Description | Validation of SCORE2 10-year cardiovascular disease risk prediction models before and after the Covid-19 pandemic in the population of England |
| Amount | £50,000 (GBP) |
| Funding ID | HDRUK2023.0237 |
| Organisation | Health Data Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 05/2023 |
| End | 04/2024 |
| Description | Wellcome Mental Health Data Prize |
| Amount | £150,000 (GBP) |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 07/2022 |
| End | 07/2025 |
| Title | 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 | GitHub repo - Long-term kidney outcomes after COVID-19 |
| Description | Open access code for analysis on OpenSAFELY platform investigating long-term kidney outcomes after COVID-19. This includes codelists, data extraction code and analysis code which can be reviewed and reproduced. |
| Type Of Material | Computer model/algorithm |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | I have presented analyses from this data at UK Kidney Week 2023. We are in the process of submitting a manuscript from our analysis for publication in a high-impact journal. |
| URL | https://github.com/opensafely/post-covid-kidney-outcomes |
| 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 | BHF Centre of Reseach Excellence, King's College London |
| Organisation | British Heart Foundation (BHF) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Claire Steves is lead for Research Theme 3 - the Ageing Heart |
| Collaborator Contribution | TwinsUK data are contributing to the research theme. This collaboration is cross disciplinary and engages researchers across cardiovascular sciences. |
| Impact | no outputs yet |
| Start Year | 2024 |
| Description | BHF Centre of Reseach Excellence, King's College London |
| Organisation | King's College London |
| Department | Cardiovascular Division |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Claire Steves is lead for Research Theme 3 - the Ageing Heart |
| Collaborator Contribution | TwinsUK data are contributing to the research theme. This collaboration is cross disciplinary and engages researchers across cardiovascular sciences. |
| Impact | no outputs yet |
| Start Year | 2024 |
| 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 |
| 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 | OpenSAFELY collaboration (Bennett Institute of Applied Data Science, University of Oxford) |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have collaborated across a range of projects related to COVID-19 as part of the OpenSAFELY group. We have contributed on clinical aspects, in particular in related to patients with kidney disease and helped shape policymaking at a national level. |
| Collaborator Contribution | The team at the Bennett Institute for Applied Data Science comprise software developers and data scientists. They have built the OpenSAFELY platform and from the outset have been collaborating more widely with the Electronic Health Records Research Group at London School of Hygiene & Tropical Medicine. They ensure appropriate governance oversight of the platform by NHS England. |
| Impact | Several publications are listed in the publications section. Presentations: 1. UK Kidney Week 2022: Best Poster award on COVID-19 vaccination in patients with advanced kidney disease 2. UK Kidney Week 2023: Invited oral presentation on the use of the OpenSAFELY platform to investigate the cost of chronic kidney disease in the context of the COVID-19 pandemic 3. UK Kidney Week 2024: Awarded Best Clinical Abstract & delivered oral presentation on ethnic inequalities in kidney outcomes after COVID-19 4. OpenSAFELY conference 2024: Delivered talk on long-term kidney outcomes after COVID-19 |
| Start Year | 2021 |
| 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 | 'Long Covid and Health Inequalities Workshop' organised by the Qualitative Long Covid Network 19th June 2023 UCL |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | The 'Long Covid and Health Inequalities Workshop' was organised by the co-convenors (Chao Fang, Sarah Baz) and workshop organisers (from various UK institutions working on QLC projects) from the Qualitative Long Covid Network - in attendance were various audience outlined above. The primary audience was academic researchers who are working on qualitative studies on Long Covid across the UK. In this workshop there were presentations on 6 projects' research findings including the qualitative longitudinal study as part of CONVALESCENCE, presentation from PPI member from CONVALESCENCE PAG group, presentations from Long Covid charity organisations and a key note from Professor Nisreen Alwan. There was also time for questions and discussion. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Academic Presentation - "Just simple little things": theorising everyday life living with Long Covid. Morgan Centre Manchester - Everyday Enchantments Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | An academic presentation titled: "Just simple little things": theorising everyday life living with Long Covid. Presented at the Morgan Centre University of Manchester - Everyday Enchantments Conference. Academic audience. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.socialsciences.manchester.ac.uk/morgan-centre/connect/events/everyday-enchantments/ |
| 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 | British Sociological Association Med Soc Conference Presentations (University of Sussex, September 2023) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | British Sociological Association Med Soc Conference Presentations (University of Sussex, September 2023). 2 presentations. Chao Fang presented at the conference, the presentation focused on Long Covid and healthcare experiences taking a person-centred theoretical approach. Sarah Baz also presented at the conference, the presentation focused on Long Covid, analysing longitudinal data and health trajectories. This was also an opportunity to network with researchers working on other Long Covid studies across the UK and internationally. |
| 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 | COVID-19 National Core Study and Convalescence Update |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Results from the Covid studies was presented at 5 different NHSD roadshows. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Celebrating Spaces: Lightning Talk. University of York. Sarah Baz Presentation. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Celebrating Spaces: Lightning Talk. University of York. Sarah Baz presented findings from the qualitative longitudinal interviews at this event taking a case study approach of one participant's experiences of Long Covid over time. There were 5 minutes to talk as this was a lightning talk and also involved other researchers from across the university. This was also recorded and the event team are aiming to upload to YouTube in the future which will gain wider reach. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Chao Fang Presentation - Gerontological Society of American 2024 annual scientific meeting in Seattle, UK in November 2024. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Gerontological Society of American 2024 annual scientific meeting in Seattle, UK in November 2024. Chao Fang presented a presentation entitled "Resilience: A 'Cure' for or a 'Response' to Aging?", which adopts data from older cohort members (aged 50 and over) to explore how living with Long COVID alongside the aging process can erode people's resilience. It also examines how individuals seek to recover their resilience through negotiation with society and healthcare systems. The aim was to present a critical lens to reconsider how resilience is framed in policy and public health domains, which often place the responsibility of managing health challenges on individuals. The presentation resonated with attendees from biomedical, social sciences, and humanities backgrounds, fostering dialogue to better understand the multifaceted impacts of Long COVID and to advocate for more enabling and sustainable support systems for those affected. |
| Year(s) Of Engagement Activity | 2024 |
| Description | China Pilot Fieldwork (qualitative) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | Chao Fang and JD Carpienteri traveled to China to engage with Long COVID patients. Key findings have indicated a significant lack of social awareness surrounding Long COVID. Patients have been compelled to navigate their experiences in isolation and contend with various stigmas both in their daily lives and workplaces. May 2023. May 2023. It was funded by the UCL Institute of Education International Funds. |
| Year(s) Of Engagement Activity | 2023 |
| 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 | Discourse forum space |
| 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 | Following deliberative discussion with public advisory group members, a dedicated topcial forum has been created to enable conversation relating to a qualitative research paper to be curated in a dedicated forum space. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Dissemination of COVID-19 vaccination research |
| 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 | Disseminated COVID-19 vaccination research findings to 12 press outlets via a Science Media Centre briefing and publicity via the University of Cambridge Press office . The research being shared was; DOI:10.1016/S0140-6736(23)02467-4 |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.cam.ac.uk/research/news/significant-gaps-in-covid-19-vaccine-uptake-may-have-led-to-over... |
| Description | Flash talk to Health Data Interest Group, London School of Hygiene & Tropical Medicine |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Short talk introducing the PhD fellowship, research methods & patient & public involvement |
| 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 | Guardian article: Young and old: how the Covid pandemic has affected every UK generation |
| 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 | Guardian article: Young and old: how the Covid pandemic has affected every UK generation. From children behind on milestones to less active older people, broader effects are being felt four years after the initial outbreak. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.theguardian.com/world/2024/mar/21/young-and-old-how-the-covid-pandemic-has-affected-ever... |
| Description | Guardian interview - Under-vaccinated ethnic minority groups in UK at higher risk of Covid |
| 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 | Interviewed by Robin McKie, science correspondent for The Observer, about research using whole-population electronic health records, featured in The Observer |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.theguardian.com/world/2024/oct/27/undervaccinated-ethnic-minority-groups-in-uk-at-higher... |
| 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 international talk (Glomcon): Investigating COVID-19 and Kidney Disease Using Electronic Health Records |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | We were invited to deliver a webinar on Glomcon, an academic research collaborative based in the US. We delivered the talk to discuss our research on the OpenSAFELY platform as well as the challenges of epidemiological research using electronic health records. The initial talk was attended by 95 people online from over 20 countries with >400 views subsequently on Youtube to date. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.youtube.com/watch?v=AND8WBepIAU&ab_channel=GlomerularDiseaseStudy%26TrialConsortium |
| Description | JD Carpentieri presenting at The University of Liverpool, Titled: Often seen but seldom heard: Giving voice to Britain's birth cohort members |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Number of people in audience: 20 Who the audience was: Academics and doctoral students in the University of Liverpool Department of Sociology, Social Pathology and Criminology Impacts: No direct impacts, but it was my first presentation at Liverpool's Centre for Ageing and the Life Course. I have hopes of working with them in the future, eg on funding proposals and research projects. Presentation abstract: The UK's birth cohort studies have been referred to as the "jewel in the crown" of British social science. These studies, which include cohorts born in 1946 and 1958, follow large, nationally representative samples of Britons from birth to death. Cohort studies thus inevitably become studies of ageing. However, almost all cohort study research has been quantitative, meaning that the voices of cohort members themselves have largely gone unheard. Over the last decade I have sought to listen to and understand these voices by conducting qualitative and mixed methods research. In this this presentation, I reflect on the challenges and benefits of focusing on cohort members' own voices within a research environment where participants are typically analysed but not listened to. In doing so, I explore cohort members' rich and complex perspectives on a broad range of ageing-related topics, including: retirement, health, physical activity, and adaptation to decline. *Cohort studies were used for the Long Covid qualitative longitudinal work.* |
| Year(s) Of Engagement Activity | 2023 |
| 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 | Laura Sheard - Talk at Brocher Foundation in Geneva, Switzerland. 8th April 2024. A longitudinal look at long Covid: understanding the healthcare journeys of people living with long Covid - A qualitative study. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Laura Sheard - Talk at Brocher Foundation in Geneva, Switzerland. 8th April 2024. A longitudinal look at long Covid: understanding the healthcare journeys of people living with long Covid - A qualitative study. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Lived Experience of Long-COVID Online Workshop (NHSE- Patient Experience Network) Tuesday 25th July 2023 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Session 1 - Insights from Health Inequalities Research for Long-COVID. Hosted by: Nisreen Alwan (University of Southampton) and Sarah Baz (University of York) on behalf of the Long Covid and Health Inequalities Academic Group (part of the Qualitative Long Covid Network). An online event organised by NHSE and patient experience network. Sarah Baz and helped organise, alongside Nisreen Alwan, on behalf of the Qualitative Long Covid network - key themes from a workshop we organised on Long Covid and Health Inequalities on 19th June 2023 at UCL were presented drawing on 6 qualitative Long Covid projects across the UK including our CONVALESCENCE qualitative longitudinal study. Through this event we were able to share outputs and resources from our project which are available online on the link below. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://patientexperiencenetwork.org/resources/lived-experience-of-long-covid-resources/ |
| 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 | NIsh networking meeting presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | This was a presentation on the innovative way that we have evaluated PPIE using the Gibson/Kellas digital cube framework |
| Year(s) Of Engagement Activity | 2023 |
| Description | National Core Study animations remote review |
| 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 | Public contributor input into public facing communications materials. Reading through and commenting on a script for a video animation |
| Year(s) Of Engagement Activity | 2023 |
| 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 | Oral Presentation @ ISPE Annual Meeting - Ruth Costello - Ursodeoxycholic acid and severe COVID-19 outcomes in people with liver disease: a cohort study using the OpenSAFELY platform |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Ruth Costell presented 'Ursodeoxycholic acid and severe COVID-19 outcomes in people with liver disease: a cohort study using the OpenSAFELY platform' at the 40th Annual Meeting of the International Society for Pharmacoepidemiology, in Berlin, Germany (August 2024) |
| Year(s) Of Engagement Activity | 2024 |
| 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 | Patient and public involvement at national 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 | 2 members of our patient and public involvement group attended UK Kidney Week 2023 in Newport. They coproduced a poster presentation for our research and an invited seminar presentation of our health economics work. The PPI team presented our poster in the panel moderated session. The PPI team were able to discuss our project with patient groups and other clinicians. They also reported that they learnt a great deal about kidney disease, inequalities in healthcare and about inequalities from conference sessions. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Patient and public involvement webinar: Long-term kidney outcomes after COVID-19 |
| 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 | This was an opportunity for me to introduce my research so far and hear thoughts from PPI partners. We had breakout groups and included Jamboards to feedback what aspects of COVID-19 and kidney disease they wanted to be investigated further as well as their advice on how to improve dissemination of research to more marginalised groups. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Patient group workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Introduction The workshop was held at the UCL Institute of Health Informatics (IHI) on 5 June 2024 and included a range of lay participants, in addition to members of the Medical information AI Data Extractor (MiADE) research team and Steering Committee members. Purpose The main purpose of the event (Part 1) was to explore participants' views on the MiADE tool (a software program currently deployed at UCLH to analyse the text in clinical notes and automatically suggest diagnosis codes, which clinicians can confirm) and to garner their thoughts on future deployment and sustainability of the tool which, in order to have widespread benefits, will need to be implemented in more hospitals and maintained beyond the end of the research project (March 2025). In addition, considering the growing interest in developing 'real-world evidence' through the study of health data collected in everyday practice, participants were also asked to discuss using clinical notes for research, particularly the symptoms that GPs may record before they make a formal diagnosis (Part 2). It was hoped that the workshop would also provide an opportunity to identify individuals interested in contributing to the future development of MiADE, as well as recruiting new members to The Health Improvement Network (THIN) Advisory Committee. Who participated in the event Participants were patients, carers or members of the public who had expressed an interest in being involved in research using health data. They were recruited from the useMYdata mailing lists and contacts of existing steering committee members. They were recruited in this way to ensure that they would have sufficient interest and background knowledge to be able to participate in the discussions and help to inform the future of the projects. Lay participants ranged from patients and carers to patient organisations' representatives, and included different age groups and ethnicities. The research team was led by Dr Anoop Shah, MiADE Principal Investigator, with support from James Brandreth, MiADE Senior Software Developer, Giovanna Ceroni, MiADE Project Manager, and Natalie Fitzpatrick, Principal Research Fellow at IHI. Facilitators also included a lay member from the MiADE Steering Committee and a member from the THIN Advisory Committee. Dr David Ryan, THIN Clinical Research Fellow was also invited to present in the second part of the event. Part 1 - MiADE and next steps Introduction In the introductory presentation, Anoop gave an overview of how healthcare records are organised, including who has access to the records generally/currently, and how the different systems works. He also considered the difference between structured and unstructured data (free text), focusing on the importance of both. Anoop also reflected on how conversion of existing unstructured to structured data at point of care would also be beneficial to both research and clinical care. A demonstration of the MiADE tool followed. Future steps and viable options Anoop then focused on the current and future life of the project. Since MiADE is time-limited project since it is funded by grants whose remit is for R&D only, it is important to consider options for the future and next steps. Anoop explained that most NHS IT software is developed by companies since hospital IT services do not typically develop new software. However, companies may be formed as 'spinouts' based on academic research generated within and owned by the University. Spinouts are often better able to turn university research into real world impact than internal departments, due to their dynamic nature and ability to make speedy decisions. In view of the above, Anoop presented workshop participants with a series of options on the MiADE future roadmap, asking them to consider the risks and benefits of each, and then cast their votes on their option(s). The options were as follows: 1. Finish/publish the research and leave it at that, allowing companies to use the research to develop their own systems 2. Seek funding for a local innovation in one or multiple hospitals 3. Seek further research grant funding for a trial to include more hospitals 4. Encourage a company to incorporate the software into their own systems 5. Develop a University-based MiADE spinout company Summary of discussion A discussion on the risks and benefits of each option followed, with workshop participants expressing a lively and thoughtful range of ideas, based on both their first-hand experience of healthcare provision and knowledge of the current debate. Comments included the following. Benefits of MiADE: - It has practical outcomes for NHS patients and clinicians (i.e. it is not just an interesting research project) - It is a sustainable system - It updates regularly - It includes diverse voices - It ensures cost-effectiveness for NHS - The model can learn from other systems that already work - It aims to provide better care for patients and to making life as efficient as possible for clinicians Risks and recommendations: - Ensure that it is tested with all major NHS patient recording interfaces/systems - Be very clear about the aims and objectives of the project - Coding that is made might be given too much weight, while uncoded/unregistered text is lost - Consider widening the scope of the project if English is not the first language - Check systems to ensure that patients are given correct medication information - Important that clinicians are engaged and use the system - Get more proof that it remains in the NHS to save money and is not lost to for-profit companies - More trials with more hospitals are needed but watch out for instability with Trusts merging and changes in IT systems and arrangements - Ensure that the project is communicated transparently to the public - Ensure that the algorithms minimise any biases/harm - Aim to make any future work non-profit if using patient data - Important to first demonstrate that it works for other hospitals; then, important to have an end goal (e.g. spinout company) - It is important to keep NHS data within the NHS - Ensure that the same systems are deployed in as many NHS hospitals as possible - Improve interface / interaction - Aim for further research within UCLH with more clinicians and a whole department involved (it is too soon for external or commercial avenues) A vote on the various options was then cast (participants could vote more than once). Results showed strongest support for "seeking further research grant funding for a trial to include more hospitals" (11 votes); the option to "develop a spinout company" also received a good number of votes (8). There were 3 votes for seeking funding for a local innovation and 1 for publishing the research and doing nothing further. Part 2 - THIN and primary care free text for research The second half of the workshop focused on the THIN (The Health Improvement Network) primary care database and the proposal to use free text in the electronic health records held therein to study symptoms of disease, improve early detection of disease and investigate drug effects in different populations. Dr David Ryan, a NIHR Academic Clinical Fellow and ST3 in Clinical Pharmacology at UCLH, presented his research proposal on 'Investigating the effects of anti-diabetes drugs using machine learning', focusing on recent anti-diabetes medications (such as sodium-glucose cotransporter-2 inhibitors (SGLT2i)) which have shown promise in reducing CVD risk according to large randomised clinical trials (RCTs). However, RCTs often exclude sicker and older patients, leading to potential discrepancies between trial results and real-world effectiveness, as these trials may not accurately reflect how these drugs perform in broader, more diverse patient populations. The real-world impact of these medications is critical to understand, as treatment decisions are frequently guided by RCT findings. To bridge this gap, there is growing interest in developing 'real-world evidence' through the study of health data collected in everyday practice. One effective method for studying real-world drug effects is through target trial emulation (TTE), which replicates the conditions of an RCT using routine health data. Preliminary studies have shown the feasibility of this approach, including successful emulation of the EMPA-REG OUTCOME trial, which demonstrated the benefit of SGLT2i in reducing CVD risk among diabetic patients. However, a TTE using UK general practice data has not yet been conducted. And this is what the researchers propose to do in the THIN database. Additionally, electronic health records (EHRs) contain valuable free text data that is often underutilised and not available to researchers. This is created when a GP or other healthcare worker writes notes about a consultation, for example the findings of an examination. By applying artificial intelligence (AI) tools to analyse this free text, we can gain deeper insights into drug effectiveness and patient responses, potentially revealing differences in drug impact between those who meet RCT eligibility criteria and those who are prescribed the medication in real-world settings. This study aims to employ new statistical techniques and AI to analyse the real-world effectiveness of SGLT2i using UK GP records. We will investigate how well these drugs work in practice, accounting for various factors such as age and ethnicity, and compare these findings with RCT results. Participants were asked to consider the use of THIN for the above-mentioned purposes and in particular to discuss: What are the risks and benefits of using free text data for these research questions? How can the risks be mitigated? How can the benefits be maximised? Summary of discussion One of the participants commented that it would be crucial to ensure that regular members of the public would understand what it is meant by 'machine learning' if their confidence in the project is sought. Another comment was that some thought should be given to the level of accuracy of the machine learning in terms of the feedback received. In general, participants felt it was a great idea and of benefit to patients, as long as the information remained anonymous. Some concern was expressed about the 2% of data that are not de-identified. Another comment was that one of the first tasks would be to describe the symptom burden of people who had diabetes and who then went on to receive different treatments. Also it would be interesting to know if a patient was on other medications (which could cause high blood sugar levels). Looking at side-effects and drug interactions. |
| Year(s) Of Engagement Activity | 2024 |
| 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 by PPIE group and PAG at the Convalescence Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | 2 members of the PAG presented. The public contributors were keen on understanding how the evidence that CONVALESENCE has produced will inform improved services and support for people with long COVID. This question was difficult to answer as policy makers/comissioners were not present. |
| Year(s) Of Engagement Activity | 2023 |
| 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 | Presenting qualitative study summary and key findings so far to the Postcovid project team at Linköping University, Sweden. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Presenting qualitative study summary and key findings so far to the Postcovid project team at Linköping University, Sweden during a dedicated Zoom session. Sarah Baz presented and Sarah Baz, JD Carpentieri and Laura Sheard answered questions from the team. |
| Year(s) Of Engagement Activity | 2023 |
| 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 Advisory Group & NICE meeting |
| 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 | Workshop with Felix Greaves (NICE) and PAG members discussing guidelines for diagnosis of long covid; variation in clinical coding and numbers of people receiving treatment in line with guidelines; and impacts for benefits claims only responding to coded records (DWP) |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Involvement Workshop addressing Conv Clinic Data |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The topic of this workshop was 'Long COVID and deficits in multiple health domains: A deep phenotyping case-control study'. Study details were discussed with the PAG, researchers and PPIE facilitators. |
| Year(s) Of Engagement Activity | 2024 |
| 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 | Public/other audiences |
| Results and Impact | Late stage draft visualisations, more easily understandable information aimed at a wide public. |
| Year(s) Of Engagement Activity | 2024 |
| 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 | Sarah Baz Presentation - British Sociological Assoiation Medical Sociology Conference 2025. Coventry, UK. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | British Sociological Assoiation Medical Sociology Conference 2025. Coventry, UK. Presented on Long Covid methods reflection. Presentation title: Reflections on conducting longitudinal qualitative research: a Long Covid project. |
| Year(s) Of Engagement Activity | 2024 |
| 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 | Symptom Cluster research findings |
| 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 | Public contributor input into Public Infographic via remote input and discussion at workshop |
| Year(s) Of Engagement Activity | 2023 |
| Description | Talk for nephrologists: COVID-19 and kidney disease using OpenSAFELY |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Laurie Tomlinson and Viyaasan Mahalingasivam gave talks to the Department of Nephrology & Transplantation at Royal London Hospital to discuss existing and future research related to COVID-19 and kidney disease. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Target Trial Emulation Seminar (Oxford) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Part 1 of a two-session seminar titled: Can large Databases of Electronic Health Records be used instead of Trials? 3 talks Target Trial Emulation: Target Trial Emulation (TTE) is promoted as a crucial tool in clinical research which replicates hypothetical trials using real-world data. It aids in assessing treatment outcomes, refining study designs, informing evidence-based medical decisions, and advancing precision medicine. Who Should Attend: Clinical researchers, data scientists, healthcare professionals, and decision-makers seeking innovative approaches to enhance research methodologies would benefit from understanding how TTE can be used. DPhils and Early and Mid-Career Researchers are particularly welcomed! First Session - 29th of January: In our first session, Linda Nab, Will Hulme, and Andrea Schaffer, all from the Bennett Institute, will present the main ideas behind TTE and examples of how they have used this methodology as part of their work. The session was attended by around 30 researchers, both in-person and remotely. There was lively discussion and debate throughout the sessions, and follow-up communications about potential future collaborations. |
| Year(s) Of Engagement Activity | 2024 |
| Description | The Conversation Insights Article - Titled: Existential crisis: how long COVID patients helped us understand what it's like to lose your sense of identity and purpose in life. |
| 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 | The Conversation Insights Article - Titled: Existential crisis: how long COVID patients helped us understand what it's like to lose your sense of identity and purpose in life. Published: August 24, 2023 10.17am BST. So far this article has 12,279 readers (checked 21/09/23) |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://theconversation.com/existential-crisis-how-long-covid-patients-helped-us-understand-what-its... |
| 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 | UCL Qualitative Health Research Network Conference Presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | UCL QHRN Conference 28th and 29th Feb. Sarah Baz presented. Presentation title: An exploration of Long Covid experiences over time drawing on interviews from a qualitative longitudinal study. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Unraveling Links Between Chronic Inflammation and Long COVID: Current State, Challenges, and Opportunities |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Invited to deliver a talk at the National Institute of Health event on Unraveling Links Between Chronic Inflammation and Long COVID: Current State, Challenges, and Opportunities. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://epi.grants.cancer.gov/events/inflammation-long-covid/ |
| 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 | Viyaasan Mahalingasivam: 2024 UK Kidney Week presentation "Ethnic differences in kidney failure after COVID-19 infection" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Viyaasan Mahalingasivam delivered an oral presentation at UK Kidney Week on 11 June 2024 in Edinburgh titled "Ethnic differences in kidney failure after COVID-19 infection". It was presented in the "Best Clinical Abstracts" session. |
| Year(s) Of Engagement Activity | 2024 |
| 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 addressing EHR and cohort analysis |
| 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 | 2 workshops with addressing EHR analysis: !) 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 | 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 |