With the emergence of COVID-19 in Wales, came uncertainty for every aspect of society. Questions quickly surfaced; how and where the virus was spreading? What effect it would have on public health? How would our health and care services handle the additional pressures? And what short and long-term impacts will the pandemic have on health and our way of life?
In recognising the scale of the task at hand, it was crucial to establish a wider, collaborative approach to intelligence generation and research. In this blog I will try to describe how the One Wales approach to COVID-19 was formed.
What is SAIL Databank?
Based at Swansea University Medical School, the Secure Anonymised Information Linkage (SAIL) Databank brings together anonymised person-level and address-level data from a variety of population-scale data sources, providing this as a resource via a secure portal known as a Trusted Research Environment or TRE.
A Welsh success story, SAIL Databank is the culmination of a decade of world leading innovation by a small team of data scientists, information governance experts and IT professionals at Swansea University, part funded by Health and Care Research Wales. Their mission was to create a secure privacy-protecting platform which provides the widest possible access to linked data without compromising data and privacy protection.
SAIL Databank has since established itself as one of the best-characterised population databanks anywhere in the world. Among its wealth of data sources, it contains 100% secondary care and 80% primary care coverage for the Welsh population, delivered through a partnership with the NHS Wales Informatics Service (NWIS).
The ‘One Wales’ Approach
A team was assembled that drew upon on the necessary expertise to guide policy decision making. Bringing together colleagues from around Wales and the UK including Health Data Research UK (HDR UK), Administrative Data Research Wales (ADR Wales), SAIL Databank, Adolescent Mental Health Data Platform (ADP), BREATHE Health Data Research Hub, Welsh Government, Public Health Wales (PHW), NHS Wales Informatics Service (NWIS) and others has resulted in an agile and responsive approach to tackling data analysis and intelligence generation based on the constant and newly developing priorities for tackling COVID-19.
I’ve been a Senior Research Manager and Data Scientist working with the SAIL Databank for over ten years, and as part HDR UK I manage a team of Researchers and Data Scientists who normally work on research projects that can sometimes take years to complete.
We are staffed to work on a planned amount of research at any one time. Our team use agile project management principles and practices, so are used to being flexible to research demands, but being so hands on in the response to COVID-19 has seen our work increase substantially and the response time for intelligence reduce.
We have been methodical in our approach and ring-fenced some staff on existing research projects that have fixed deadlines to complete their outcomes, but the rest of the team are totally focussed on responding to the challenges faced by COVID-19 and providing decision-makers with the information they need. We have on the whole avoided taking annual leave and many are working far more hours than contracted due to the pandemic, but we are extremely proud to be a part of this and have done so voluntarily with the backing of a strong support system to ensure our teams physical and mental health.
In recent developments, new real-time analysis demonstrating the spread of COVID-19 in Wales, using geospatial data has directly informed the government policy and interventions. The project uses COVID-19 testing data which is received daily, to confirm rates and increases in COVID-19 infection around Wales using positive results and the date the tests are taken. As with all data in the SAIL Databank, this is held anonymously and securely, accessed via the privacy protecting gateway with testing data linked to geospatial data sources to model the spread and transmission over time and across Wales.
Why is SAIL Databank important to COVID-19 research?
SAIL Databank can monitor the impact of a very wide range of exposures and outcomes on the entire population using robustly de-identified data. It is possible to track the development of health conditions in individuals and nested within households and multi-occupancy residences such as care-homes, as well as organised settings such as schools, monitor the development and spread of diseases, and evaluate the impact of exposures and the effects of treatments on outcomes.
As well as having a wide range of existing routine data sources, a massive effort has been undertaken as part of the COVID-19 pandemic to being in a range of new and novel data sources, in addition to the frequency of data sources being increased in some cases from yearly to monthly if not weekly or daily. These additional and increased flows of data really aid in the real-time nature and requirements of COVID-19 intelligence generation.
For research and intelligence to be effective, approvals need to be considered promptly. The SAIL Databank team is able to make data available in as quickly as 48-hours whilst maintaining its defining set of governance protocols. This is during a period when the team are seeing as many data access requests from researchers in one week as they would more commonly see in a typical month.
How is SAIL Databank contributing to COVID-19 research?
Driven by an existing collaboration with Health Data Research (HDR) UK; a consortium set up to unite the UK’s health data to make it available for research, extensive health data research networks have been leveraged to enable each home nation’s TRE to provide data access for a high volume of COVID-19 research studies.
SAIL Databank’s role is helping to inform and provide intelligence to the Welsh Government’s Tactical Advisory Group in its COVID response, subsequently feeding into the UK’s SAGE (Scientific Advisory Group for Emergencies). In an update to SAGE at the beginning of June 2020, HDR UK recognised SAIL Databank as “leading the way across all dimensions, highlighting the benefits of having mature infrastructure in place from the outset.”
SAIL is enabling research across the following areas:
- Government and NHS emergency response planning Assessments of the impact of the pandemic on mental health
- Clinical trials comparing treatment pathways
- Investigations into the link between ethnicity and the severity of COVID-19
- Linking data to COVID-19 testing programmes
- Impacts on society’s most vulnerable groups
What’s next for the SAIL Databank and the One Wales response to COVID-19?
The collaborative team from around Wales and the UK continues to grow and expand, with new people and groups joining all the time with the relevant expertise and experience in using big-scale data coming together to generate intelligence needed by TAG and SAGE. If you are interested in joining the response please get in touch with us to discuss and see how your efforts and work align with the national TAG priorities and can support Wales’s response to the COVID-19 pandemic.