Abstract
BackgroundVast amounts of data are collected about patients and service users in the course of health and social care service delivery. Electronic data systems for patient records have the potential to revolutionise service delivery and research. But in order to achieve this, it is essential that the ability to link the data at the individual record level be retained whilst adhering to the principles of information governance. The SAIL (Secure Anonymised Information Linkage) databank has been established using disparate datasets, and over 500 million records from multiple health and social care service providers have been loaded to date, with further growth in progress.MethodsHaving established the infrastructure of the databank, the aim of this work was to develop and implement an accurate matching process to enable the assignment of a unique Anonymous Linking Field (ALF) to person-based records to make the databank ready for record-linkage research studies. An SQL-based matching algorithm (MACRAL, Matching Algorithm for Consistent Results in Anonymised Linkage) was developed for this purpose. Firstly the suitability of using a valid NHS number as the basis of a unique identifier was assessed using MACRAL. Secondly, MACRAL was applied in turn to match primary care, secondary care and social services datasets to the NHS Administrative Register (NHSAR), to assess the efficacy of this process, and the optimum matching technique.ResultsThe validation of using the NHS number yielded specificity values > 99.8% and sensitivity values > 94.6% using probabilistic record linkage (PRL) at the 50% threshold, and error rates were < 0.2%. A range of techniques for matching datasets to the NHSAR were applied and the optimum technique resulted in sensitivity values of: 99.9% for a GP dataset from primary care, 99.3% for a PEDW dataset from secondary care and 95.2% for the PARIS database from social care.ConclusionWith the infrastructure that has been put in place, the reliable matching process that has been developed enables an ALF to be consistently allocated to records in the databank. The SAIL databank represents a research-ready platform for record-linkage studies.
Highlights
Vast amounts of data are collected about patients and service users in the course of health and social care service delivery
As this study involved work with potentially person-identifiable variables it was conducted in Health Solutions Wales (HSW) who act as the Trusted Third Party (TTP) in providing Health Information Research Unit (HIRU) with a data pseudonymisation service [6]
The percentage of records in the general practices (GP) dataset that could be matched to the National Health Service (NHS) Administrative Register (NHSAR) was > 99.99%
Summary
Vast amounts of data are collected about patients and service users in the course of health and social care service delivery. HIRU has set up the SAIL (Secure Anonymised Information Linkage) databank to bring together and link the widest possible range of anonymised person-based data, and has done this using a split-file approach to anonymisation to overcome the confidentiality and disclosure issues in healthrelated data warehousing Through this method, datasets being provided to the SAIL databank are split at the source organisation into demographic data and clinical data. An ALF takes the form of a unique 10-digit number assigned to each individual in a dataset This product is transferred to HIRU where it is joined to the clinical data via the system linking field [6]
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