In an open letter this week, sent to the UK Information Commissioner, Chief Medical Officers of the UK, and UK data providers, and signed by 374 signatories, SAIL Databank has been highlighted as an exemplar data access system in an otherwise disparate UK data landscape.
The Secure Anonymised Information Linkage (SAIL) Databank has established itself as one of the best-characterised population databanks anywhere in the world. Among its wealth of UK data sets, it contains 100% secondary care and 80% primary care coverage for the Welsh population.
This wealth of information within SAIL can be used to 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.
This makes for an invaluable tool in the COVID-19 response. In addition to its data assets, it’s the speed and agility in making data available to coronavirus researchers that has set SAIL apart during this pandemic.
In the letter, published on the 6th July in The BMJ Opinion blog, the authors commended SAIL Databank as an exemplar operating model…
‘(To) reduce data release delays through increased capacity and more specialised data providers. Independent, accredited data providers should be created, with expert processing and disseminating capacity, knowledge of how data are used in research, and understanding of how best to prepare and deliver datasets to researchers (emulating the successful Secure Anonymised Information Linkage (SAIL) Databank in Wales).’
SAIL’s responsiveness is owed to a simplified approvals process, a close and collaborative relationship with data providers such as NHS Wales Informatics Service (NWIS), and the core funding it receives via Health and Care Research Wales; reducing cost barriers to de-identified data access.
This is further supported by the latest figures from Health Data Research (HDR) UK’s fortnightly update from 7th July that feeds into UK SAGE (Scientific Advisory Group for Emergencies). The figures show SAIL is currently supporting more than half of all COVID-19 research being undertaking across the 4 UK nation’s central data safe havens –
HDR UK is a consortium set up to unite the UK’s health data to make it available for research and has previously acknowledged SAIL Databank to be “leading the way across all dimensions, highlighting the benefits of having mature infrastructure in place from the outset.”
SAIL Databank COVID-19 research is now taking place under them following themes:
- 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
Read the full letter here…
BY CHRIS ROBERTS, SWANSEA UNIVERSITY