A Profile of the SAIL Databank on the UK Secure Research Platform

Abstract

Background
 The Secure Anonymised Information Linkage (SAIL) Databank is a national data safe haven of de‑identified datasets principally about the population of Wales, made available in anonymised form to researchers across the world. It was established to enable the vast arrays of data collected about individuals in the course of health and other public service delivery to be made available to answer important questions that could not otherwise be addressed without prohibitive effort. The SAIL Databank is the bedrock of other funded centres relying on the data for research.
 Approach
 SAIL is a data repository surrounded by a suite of physical, technical and procedural control measures embodying a proportionate privacy-by-design governance model, informed by public engagement, to safeguard the data and facilitate data utility. SAIL operates on the UK Secure Research Platform (SeRP), which is a customisable technology and analysis platform. Researchers access anonymised data via this secure research environment, from which results can be released following scrutiny for disclosure risk. SAIL data are being used in multiple research areas to evaluate the impact of health and social exposures and policy interventions. 
 Discussion
 Lessons learned and their applications include: managing evolving legislative and regulatory requirements; employing multiple, tiered security mechanisms; working hard to increase analytical capacity efficiency; and developing a multi-faceted programme of public engagement. Further work includes: incorporating new data types; enabling alternative means of data access; and developing further efficiencies across our operations.
 Conclusion
 SAIL represents an ongoing programme of work to develop and maintain an extensive, whole population data resource for research. Its privacy-by-design model and UK SeRP technology have received international acclaim, and we continually endeavour to demonstrate trustworthiness to support data provider assurance and public acceptability in data use. We strive for further improvement and continue a mutual learning process with our contemporaries in this rapidly developing field.

Data Resource: population level family justice administrative data with opportunities for data linkage

“…Data are anonymised in the SAIL Databank [9,13] through a succession of processes beginning with a split file process whereby the commonly recognised identifiers (including name and address) are separated from the content data (such as, test results or diagnoses for health data, or legal applications and orders for family justice data). A trusted third party carries out data matching [9] and allocates a unique anonymised linking field (ALF) [14] to each individual represented in the dataset where a successful match is made. The matching algorithm uses deterministic 1 matching using UK NHS (National Health Service) numbers or full matching of all other identifiers (names, sex, date of birth and post code) followed by probabilistic 2 matching using a combination of the identifiers.…”

“…Records successfully matched have an ALF and can be further linked across multiple data sources within SAIL, such as hospital admissions and address registration datasets which facilitate address and area level analyses using a residential anonymised linking fields (RALF) [15] and Lower Layer Super Output Areas (LSOA) linked to area level deprivation indices. Further controls are enacted within SAIL to provide data access for research in anonymised form within a privacy protecting safe haven [9].…”

“…We have demonstrated the potential of data linkage of children and adults involved in Family Courts in Wales to other health and administrative data within the SAIL Databank with two research example uses. Our first example of linking to 9 Care orders: the application requests that the local authority seeks to obtain parental responsibility and the child is likely to be placed into foster care 10 Placement orders: the application paves the way for the child to be placed for adoption health datasets showed that 40% of Cohort 2 had hospital inpatient admissions, 27% had emergency admissions, 54% had emergency department attendances and 61% had outpatient appointments, and that 84% of Cohort 2 had a GP record during a four year time period centred around the date that Cafcass Cymru received the application. Our second example showed that individuals involved in private and public law applications were more likely to reside in deprived areas and allowed direct comparison between these groups.…”

“…The partnership will embed national data sources from both England and Wales into the Secure Anonymised Information Linkage (SAIL) Databank at Swansea University, United Kingdom. SAIL has already brought together a wealth of routinely collected population-scale data on health, education, governmental and social care relating to individuals living in Wales, so that they can be reliably and anonymously linked at the individual level and securely used for research [9]. The addition of family justice data within the SAIL Databank enables increased access to core national family justice administrative data and, for the first time, the potential for rich and novel studies through the record-level linkage of these administrative data.…”

Identifying children with Cystic Fibrosis in population-scale routinely collected data in Wales

“…The anonymisation process is conducted by the NHS Wales Informatics Ser-vice (NWIS) and involves splitting any identifiable data from the clinical data and assigning an Anonymised Linkage Field (ALF) to an individual based on a number of matching criteria. This enables the linkage of cases across multiple data sources that are acquired and linked into SAIL through matching via their ALF, and allows a broad longitudinal view of their conditions and treatments [7,8] .…”