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      The SAIL databank: linking multiple health and social care datasets

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          Abstract

          Background

          Vast 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.

          Methods

          Having 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.

          Results

          The 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.

          Conclusion

          With 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.

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          Most cited references8

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          The value of health care – a matter of discussion in Germany

          Background Interest in assessing the value of health-care services in Germany has considerably increased since the foundation of the Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen, IQWiG (Institute for Quality and Efficiency in Health Care). The practical application of value assessment illustrates how problematic the process can be. In all decisions made for the provision of health care, data concerning the measurable dimensions (quantity and quality of efficacy and effectiveness, validity of the results and costs) flow into a complex and not yet standardized decision-making process concerning public financing. Some of these decisions are based on data of uncertain validity, unknown reproducibility and unclear appropriateness. Discussion In this paper we describe the theoretical aspects of value from psychological and economic viewpoints and discuss national and international approaches. Methodic details and difficulties in assessing the value of health-care services are analysed. A definition of the intangible value of health-care services will be proposed which contains only three factors: the absolute risk reduction (usually a measure of efficacy), the validity of the scientific papers examined and the type of the expected effectiveness (prevention of death and disability, restitution of well-being). The intangible value describes the additional benefit when comparing two possible actions, like treatment or observation only. Conclusion The description of intangible value from the viewpoint of different stakeholders is a useful measure for subsequent steps (not discussed here) – the evaluation of costs and of patient benefit. A standardised, transparent, fair and democratic evaluation is essential for the definition of a basic benefit package.
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            Record linkage software in the public domain: a comparison of Link Plus, The Link King, and a 'basic' deterministic algorithm.

            The study objective was to compare the accuracy of a deterministic record linkage algorithm and two public domain software applications for record linkage (The Link King and Link Plus). The three algorithms were used to unduplicate an administrative database containing personal identifiers for over 500,000 clients. Subsequently, a random sample of linked records was submitted to four research staff for blinded clerical review. Using reviewers' decisions as the 'gold standard', sensitivity and positive predictive values (PPVs) were estimated. Optimally, sensitivity and PPVs in the mid 90s could be obtained from both The Link King and Link Plus. Sensitivity and PPVs using a basic deterministic algorithm were 79 and 98 per cent respectively. Thus the full feature set of The Link King makes it an attractive option for SAS users. Link Plus is a good choice for non-SAS users as long as necessary programming resources are available for processing record pairs identified by Link Plus.
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              Computerised record linkage: Compared with traditional patient follow-up methods in clinical trials and illustrated in a prospective epidemiological study

              (1995)
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                Author and article information

                Journal
                BMC Med Inform Decis Mak
                BMC Medical Informatics and Decision Making
                BioMed Central
                1472-6947
                2009
                16 January 2009
                : 9
                : 3
                Affiliations
                [1 ]Health Information Research Unit (HIRU), Centre for Health Information Research & Evaluation (CHIRAL), School of Medicine, Swansea University, Swansea, Wales, UK
                [2 ]Health Solutions Wales (HSW), Brunel House, Cardiff, Wales, UK
                Article
                1472-6947-9-3
                10.1186/1472-6947-9-3
                2648953
                19149883
                15557289-528d-4832-8f95-eb8ce7bc94bb
                Copyright ©2009 Lyons et al; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 25 July 2008
                : 16 January 2009
                Categories
                Research Article

                Bioinformatics & Computational biology
                Bioinformatics & Computational biology

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