If research is approved by the IGRP, users are granted access to the high-powered Secure eResearch Platform (SeRP). The panel includes representatives of professional and regulatory bodies and the public. An independent Information Governance Review Panel (IGRP) was established to review proposals to work with the data. This means that SAIL Databank meets the strictest international standards. These features contribute to Digital Economy Act (DEA) 2017 accreditation from the UK Statistics Authority and ISO27001 certification. The SAIL Databank has developed a sophisticated suite of information security measures incorporating physical, technical and procedural controls. DHCW provides essential support with data transfer, and expertise to develop a separation principle for data anonymisation. 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. A lack of uniformity and consistency of data standards across this landscape has only added to the inherent complexities. The Challenge Historically, healthcare and administrative data have existed in disparate siloes without the necessary linkage infrastructure to generate population level intelligence.
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