Background to National Core Studies
In response to the COVID-19 emergency, The UK Government swiftly established the National Core Studies (NCS) initiative in Summer 2020 to tackle the unique combination of health risks posed by the pandemic. In a letter to key strategic delivery partners sent by the Chief Medical Officer, Sir Patrick Vallance, experts and key funders of research were rallied to identify several areas where the UK needed to increase scale and infrastructure to respond to the immediate challenges.
Six strategic areas were identified:
- Epidemiology and Surveillance
- Clinical Trials Infrastructure
- Transmission and Environment
- Longitudinal Health and Wellbeing
- Data and Connectivity
Data & Connectivity NCS
As the national institute for health data science, Health Data Research (HDR) UK exists to unite the UK’s health and care data to enable discoveries that improve people’s lives. HDR UK was tasked, in partnership with the Office for National Statistics (ONS), to lead the Data & Connectivity NCS. Its function was to provide the vitally important data solutions for the other NCS strategic workstreams by connecting UK health data to accelerate COVID-19 research.
Supported by £23.3M UKRI funding from October 2020 to September 2022, Data & Connectivity have brought together key assets of the UK data infrastructure by working in partnership with stakeholders from across the four UK nations to organise medical, biological, and social science data on an unprecedented scale. The programme works with six Trusted Research Environment (TRE) delivery partners to deliver streamlined access to a variety of health and administration data via these six TREs across the four nations.
The SAIL Databank TRE
In Wales, the Secure Anonymised Information Linkage (SAIL) Databank is based at Swansea University Medical School, Faculty of Medicine, Health & Life Science, Swansea University. The SAIL Databank TRE contains billions of anonymised individual-level, person-based population-scale records, that span health, administrative, social care, justice, housing and education-related data. One of the best characterised population databanks found anywhere in the world, the SAIL Databank contains 100% data coverage for secondary care and 80% coverage of primary care for the population of Wales.
The SAIL Databank and the population data science group at Swansea were well-positioned to rapidly support the Data & Connectivity objectives owing to its:
- Well established infrastructure and networks that have existed since 2006.
- Robust governance mechanisms to ensure safe researcher access and high-quality research output.
- High Performance Computing capabilities afforded by the Secure eResearch Platform (SeRP) technology.
- Emphasis on public involvement to ensure all research using SAIL data delivers positive outcomes for people and society.
- Expertise from researchers and data scientists to deliver research and intelligence, as well as enable and support collaboration across the UK.
SAIL and a coordinated ‘One Wales’ response
SAIL’s expertise and long-established networks meant they were well-placed to take on a central role to support a cohesive, agile response to what was a fluid situation across Wales. Coinciding with the advent of NCS, key stakeholders across multidisciplinary organisations including academia, public health, government, NHS, charities and the public, were brought together in what became known as the ‘One Wales’ response (https://popdatasci.swan.ac.uk/news/one-wales/).
The One Wales initiative wishes to acknowledge the collaborative partnership that enabled the collaboration which was led by the Swansea University Health Data Research UK team under the direction of the Welsh Government Technical Advisory Cell (TAC) and includes the following groups and organisations: the Secure Anonymised Information Linkage (SAIL) Databank, Administrative Data Research (ADR) Wales, Digital Health and Care Wales (DHCW formerly NHS Wales Informatics Service (NWIS)), Public Health Wales, NHS Shared Services and the Welsh Ambulance Service Trust (WAST). All research conducted has been completed under the permission and approval of the SAIL independent Information Governance Review Panel (IGRP) project number 0911.
Insights developed by the One Wales collaboration were directly applied to the decision-making processes of Welsh Government’s Technical Advisory Group (TAG) and onwards to the UK Scientific Advisory Group for Emergencies (SAGE). The work completed by the One Wales collaboration uses data provided by patients and collected by the NHS as part of their care and support. We would also like to acknowledge all data providers who make anonymised data available for research.
Clinical Professor of Public Health and Co-Director of SAIL Databank, Ronan Lyons OBE, commented;
“The emergence of Covid-19 presented us with a public health challenge of unparelleled scale and when the call came to support the Data & Connectivity arm of NCS we knew that SAIL Databank could, and should, play a central role. Owing to the hard work of the SAIL Databank team over the last 15 years, we were able to leverage our networks, processes and technology to strengthen NCS efforts.”
“We quickly established new COVID-19 data flows and raised the cadence of our existing routinely-collected data by virtue of a dynamic partnership with Digital Health and Care Wales who facilitate data transfer and anonimisation. I am incredibly proud of our team’s achievements and grateful to our partners, whose extraordinary efforts have had a huge impact on the national response to keep people safe during this pandemic”.
How did NCS support One Wales efforts?
The success of the One Wales response has been driven by NCS foresight and the strong collaborative bond between HDR UK and SAIL Databank to work adaptively and with urgency to confront COVID-19. The Data & Connectivity arm of NCS has supported the acquisition of a host of new COVID-19-specific data, along with the increased cadence and availability of flows of existing data sources within SAIL Databank. The vital new data assets include:
- COVID-19 Consolidated Deaths (CDDS)
- COVID-19 Shielded People List (CVSP)
- COVID-19 Test Results (PATD)
- Healthcare Workers Risk Assessment (HWRA)
- Critical Care Dataset (CCDS)
- COVID-19 Symptom Tracker Dataset (CVST)
- Covid Lateral Flow Test (CVLF)
- COVID-19 Test Trace and Protect (CTTP)
- Intensive Care National Audit and Research Centre – Covid19 (ICNC)
- Intensive Care National Audit and Research Centre – Covid19 (ICNC)
- ADDD Annual District Death Daily
- CVVD COVID Vaccine Data
- DSRD Daily Situation Report Data
- EDDD Emergency Department Dataset Daily
- GPCD General Practice COVID daily
- NHSO NHS 111 Call data
- SACT Systemic Anti-Cancer Therapy
- WASD Welsh Ambulance Service Dataset
- CNIS Cancer Network Information System Cymru (CaNISC)
- CVSD COVID-19 Sequence Data
- EDAD Education Attendance Data
- SCPM Suspected Cancer Pathway Monthly
- WDDS Wales Dispensing DataSet
- DSCW Domiciliary Social Care Workers
- SWAC School Workforce Annual Census
What impact has NCS had in Wales?
The SAIL Databank, HDR UK, ADR UK and the other networks which population data science are key strategic partners in have enabled discussion and pathways to be opened up within the data landscape and brought data controllers and researchers together for societal and public benefit. The Data and Connectivity NCS efforts have so far enabled a broad range of vital research by One Wales collaborators that has impacted a wide range of groups and services, including some of the following:
|Vulnerable People||REPORT ON COVID-19 IMPACT ON SHIELDED PEOPLE – Provided evidence to Welsh Government of the support needs of those shielding.|
|Children & Young People||STUDY SHOWS THE OPENING OF SCHOOLS IN WALES WAS NOT ASSOCIATED WITH AN INCREASED COVID-19 RISK TO STAFF– Informed government’s approach to re-opening schools following lockdown.|
|Ethnic Minority Groups||THE COLLABORATIVE APPROACH AIDING UNDERSTANDING OF VACCINE UPTAKE AND SAFETY IN WALES– Highlighted vaccination gaps between ethnic minorities and general population for targeted interventions.|
|People Living in Deprived Areas||RESEARCH UNCOVERS COVID-19 VACCINATION INEQUALITIES THROUGHOUT WALES– Enabled Welsh Government to target interventions towards specific communities.|
|Healthcare Workers||STUDY TO ASSESS RISK OF COVID-19 TO HEALTH OF DOMICILIARY CARE WORKERS IN WALES– Highlight the risks to staff to support safety improvements for this essential workforce.|
|Elderly People||SAIL DATABANK REVEALS NO CASES OF RARE FORM OF CLOTTING IN COVID-19 VACCINATED POPULATION IN WALES – Analysis of early vaccination data, following reports of blood clotting, showed no significant risk for the elderly.|
|General Populations||GEOSPATIAL MODELLING TO PREDICT COVID PREVALENCE AT COMMUNITY LEVEL – Mapping of COVID-19 ‘hotspots’ across Welsh communities to inform Government’s lockdown strategy.|
More impact resulting from the NCS-enabled ‘One Wales’ collaboration can be found here – https://popdatasci.swan.ac.uk/news/one-wales/