The Challenge
Historically, healthcare and administrative data have existed in disparate siloes without the necessary linkage infrastructure to generate population level intelligence. A lack of uniformity and consistency of data standards across this landscape has only added to the inherent complexities.
The challenge for our SAIL Databank was how do you safely acquire vast amounts of data, in a safe and secure way, that robustly preserves the privacy of those individuals represented in the data?
The other major challenge was how do you then restrict access to only legitimate researchers and provide an advanced technology platform that allows authorised, remote users to make the most of the data for society’s benefit?
The final test was how do you achieve all that whilst maintaining stakeholder confidence and, crucially, public trust?
The Method
Since its inception, the SAIL Databank has benefitted greatly from a partnership with the NHS Wales’ Digital Health and Care Wales (DHCW) with core funding from Health and Care Research Wales. DHCW provides essential support with data transfer, and expertise to develop a separation principle for data anonymisation.
The SAIL Databank has developed a sophisticated suite of information security measures incorporating physical, technical and procedural controls. These features contribute to Digital Economy Act (DEA) 2017 accreditation from the UK Statistics Authority and ISO27001 certification. This means that SAIL Databank meets the strictest international standards.
An independent Information Governance Review Panel (IGRP) was established to review proposals to work with the data. The panel includes representatives of professional and regulatory bodies and the public. If research is approved by the IGRP, users are granted access to the high-powered Secure eResearch Platform (SeRP). SeRP allows data owners and researchers to store, access, share, analyse and link data, at scale, in a governed environment whilst always maintaining full control of the data.
Finally, to build public trust in our management of public data we established the Consumer Panel – an active panel comprising members of the public with a variety of interest areas who advise and steer all our data-intensive research projects.
The Impact
The SAIL Databank’s development over the last 15 years has led to a vast range of potential and achieved impacts. As one of the best characterised population databanks found anywhere in the world, the SAIL Databank were also well positioned to rapidly support COVID-19 research and response efforts. A short selection of our impact is listed below…
