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COVID-19 Longitudinal Health and Wellbeing National Core Study



Understanding the long-term impact of the COVID-19 pandemic on health and wellbeing

By COVID-19 LH&W National Core Study, on 8 July 2021

By Professor Nish Chaturvedi and Professor Jonathan Sterne 

Like many of our colleagues, each of us adapted our research from March 2020 onwards, to prioritise information that would help mitigate the impacts of the pandemic. This included asking our established population-based cohorts additional questions about COVID-19, and planning how best to harness the unique strengths of whole population anonymised health records to address key questions. Using these and other approaches, our knowledge of COVID-19 has evolved rapidly. Yet further research is required to understand the long-term health, social, and economic impacts of this disease.

The COVID-19 Longitudinal Health and Wellbeing National Core Study

In October 2020, Sir Patrick Vallance, UK Government Chief Scientific Adviser, established the National Core Studies (NCS) as part of the UK’s response to the COVID-19 pandemic. Six NCS were created focussing on key areas in which the UK needed to rapidly increase research scale to respond to the near term strategic, policy, and operational needs. These included Epidemiology and Surveillance, Clinical Trials Infrastructure, Transmission and Environment, Immunity, Data Connectivity, and Longitudinal Health and Wellbeing.

Leads for each of the NCS were approached some weeks before their launch, to articulate research gaps within their domains and devise plans to address these. We agreed that the overarching aim of the COVID-19 Longitudinal Health and Wellbeing (LH&W) NCS is to understand the health, social and economic impacts of the COVID-19 pandemic. Funding to support this major initiative was provided by UK Research and Innovation (UKRI).

The pandemic has resulted in collaborative, multidisciplinary research on an unprecedented scale and the LH&W NCS is no exception. Our team unites experts from leading institutions across the UK whose domains include epidemiology, biomedicine, social sciences, statistics, engineering and computer science. We are working to enhance and interrogate national, anonymised, integrated health records and, in parallel, longitudinal population cohorts for COVID-19 research. Participating institutions are mostly universities, but also include NHS trusts and representation from The National Institute for Health and Care Excellence (NICE). This multi-institutional collaborative team adapted to rapidly changing circumstances during the first phase of the LH&W NCS. Entering the second phase, we have 7 research themes:

UK Longitudinal Linkage Collaboration
Healthcare Disruption
Mental Health
Society and Health

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

Although the existence of Long COVID is recognised, much remains unknown. In March 2021, we were given the go ahead to start the NIHR-UKRI funded CONVALESCENCE study. This will help to define Long COVID, its determinants and health, social and economic consequences to improve diagnosis, management and support using a combination of quantitative, qualitative and deep phenotyping approaches. Working with NICE, we will ensure that the latest evidence is passed on immediately, supporting NICE’s goal of providing ‘living guidance’ for the diagnosis and management of Long COVID.

The value of uniting established longitudinal population cohorts and national anonymised electronic health records

The team are addressing each research question by using data from established longitudinal population cohorts (led by NC) and national pseudonymised whole-population linked electronic health records (EHR ( led by JS)). These include the SAIL Databank (Wales), EAVE II (Scotland), and OpenSAFELY and the NHS Digital Trusted Research Environment Service for England, which both cover the whole of England and were established in direct response to the pandemic to enable secure, rapid analysis on primary care data linked to secondary care and COVID datasets.

Longitudinal cohorts, though smaller, have detailed pre-pandemic health and socioeconomic data, collected on all participants, where possible using objective measurement methods. This enables greater granularity of enquiry than that allowed by EHR analysis, and importantly allows us to understand how pre-pandemic factors modify disease risk and its outcomes. The UK is proudly and uniquely placed globally in the richness of its population cohorts spanning the country, covering many age and socioeconomic groups, and including hard-to-reach groups such as ethnic minorities. Renowned cohorts collaborating within the LH&W NCS include ALSPAC, BCS70, Born In Bradford , ELSA, Generation Scotland , Millennium Cohort Study , NCDS, Next Steps , NSHD , SABRE Study TwinsUK  and Understanding Society . They have been at the forefront of the UK’s response to COVID-19, and importantly include people who have not consulted with health care services.

Parallel analysis of whole-population linked EHR, which provide breadth of coverage, and in-depth data from population cohorts will provide complementary insights that enhance the robustness of our findings. By linking EHR and cohorts, we can relate the detailed, universal pre-pandemic information from cohorts to disease endpoints captured in EHR.

Although some cohorts have linked their data with EHR before the pandemic there was no unified or comprehensive approach. We have therefore established the UK Longitudinal Linkage Collaboration (UK LLC), which will unite cohort and EHR data within a single Trusted Research Environment. This key LH&W NCS initiative unites processes, minimises duplication of effort, ensures data security, and provides secure access to accredited researchers.

Impact of results

The result of this work will inform policies to help mitigate the impacts of the pandemic on health and society. To date we have provided policy makers and NICE with vital information on:
• Long COVID risk factors https://www.medrxiv.org/content/10.1101/2021.06.24.21259277v1
• Long COVID GP coding differences https://bjgp.org/content/early/2021/06/28/BJGP.2021.0301
• The effect of the pandemic on mental health https://www.medrxiv.org/content/10.1101/2021.03.26.21254424v2
• The significance of pre-pandemic mental health on health care disruptions https://www.medrxiv.org/content/10.1101/2021.04.01.21254765v1
• How government initiatives such as the furlough scheme have affected health and wellbeing https://www.medrxiv.org/content/10.1101/2021.06.08.21258531v1
• Inequalities in healthcare disruption  https://www.medrxiv.org/content/10.1101/2021.06.08.21258546v1

These outputs provide early evidence of the value and impact of this kind of multi-disciplinary, inter-institutional, cross platform approach to answering a broad range of key questions.

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