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      A case study of the Secure Anonymous Information Linkage (SAIL) Gateway: A privacy-protecting remote access system for health-related research and evaluation ☆

      research-article
      Author(s): * , , , , , , , , ,
      Publication date PMC-release:
      Journal: Journal of Biomedical Informatics
      Publisher: Elsevier
      Keywords: AIX, Advanced Interactive eXecutive, ALF, Anonymous Linking Field, CIPHER, Centre for the Improvement of Population Health through E-records Research, DB2, a family of database server products developed by International Business Machines (IBM) , DP, Data Provider, HTTPS, HyperText Transfer Protocol Secure, IGRP, Information Governance Review Panel, LSOA, Lower Super Output Area, NHS, National Health Service, NWIS, NHS Wales Informatics Service, RALF, Residential Anonymous Linking Field, SAIL, Secure Anonymised Information Linkage, SQL, Structured Query Language, UKSeRP, UK Secure Research Platform, VPN, Virtual Private Network, Data linkage, Remote access system, Privacy-protection, e-Records research

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          Graphical abstract

          Highlights

          • •

            SAIL Gateway is a privacy-protecting safe haven and secure remote access system.

          • •

            It provides secure data access to approved users.

          • •

            It is a powerful platform for data analysis activities.

          • •

            The system is able to accommodate a growing data user base.

          • •

            This is a challenging field with further improvements in progress.

          Abstract

          With the current expansion of data linkage research, the challenge is to find the balance between preserving the privacy of person-level data whilst making these data accessible for use to their full potential. We describe a privacy-protecting safe haven and secure remote access system, referred to as the Secure Anonymised Information Linkage (SAIL) Gateway. The Gateway provides data users with a familiar Windows interface and their usual toolsets to access approved anonymously-linked datasets for research and evaluation. We outline the principles and operating model of the Gateway, the features provided to users within the secure environment, and how we are approaching the challenges of making data safely accessible to increasing numbers of research users. The Gateway represents a powerful analytical environment and has been designed to be scalable and adaptable to meet the needs of the rapidly growing data linkage community.

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          A Large-Scale Study of Anxiety and Depression in People with Multiple Sclerosis: A Survey via the Web Portal of the UK MS Register

          Kerina Jones, David Ford, Philip Jones … (2012)
          Introduction Studies have found that people with Multiple Sclerosis experience relatively high rates of anxiety and depression. Although methodologically robust, many of these studies had access to only modest sample sizes (N 4000) to: describe the depression and anxiety profiles of people with MS; to determine if anxiety and depression are related to age or disease duration; and to assess whether the levels of anxiety and depression differ between genders and types of MS. Methods From its launch in May 2011 to the end of December 2011, 7786 adults with MS enrolled to take part in the UK MS Register via the web portal. The responses to the Hospital Anxiety and Depression Scale (HADS) were collated with basic demographic and descriptive MS data provided at registration and the resulting dataset was analysed in SPSS (v.16). Results The mean HADS score among the 4178 respondents was 15.7 (SE 0.117, SD 7.55) with a median of 15.0 (IQR 11). Anxiety and depression rates were notably high, with over half (54.1%) scoring ≥8 for anxiety and 46.9% scoring ≥8 for depression. Women with relapsing-remitting MS were more anxious than men with this type (p<0.001), and than women with other types of MS (p = 0.017). Within each gender, men and women with secondary progressive MS were more depressed than men or women with other types of MS (p<0.001, p<0.001). Conclusions This largest known study of its kind has shown that anxiety and depression are highly prevalent in people with MS, indicating that their mental health needs could be better addressed. These findings support service planning and further research to provide the best care for people with MS to help alleviate these debilitating conditions.
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            From health research to social research: privacy, methods, approaches.

            Leslie L. Roos, Marni Brownell, Lisa Lix … (2008)
            Information-rich environments in Canada, Australia, and the United Kingdom have been built using record linkage techniques with population-based health insurance systems and longitudinal administrative data. This paper discusses the issues in extending population-based administrative data from health to additional topics more generally connected with well being. The scope of work associated with a multi-faceted American survey, the Panel Study in Income Dynamics (PSID), is compared with that of the administrative data in Manitoba, Canada. Both the PSID and the Manitoba database go back over 30 years, include families, and have good information on residential location. The PSID has emphasized research design to maximize the opportunities associated with expensive primary data collection. Information-rich environments such as that in Manitoba depend on registries and record linkage to increase the range of variables available for analysis. Using new databases on education and income assistance to provide information on the whole Manitoba population has involved linking files while preserving privacy, scaling educational achievement, assessing exposure to a given neighborhood, and measuring family circumstances. Questions being studied concern the role of the socioeconomic gradient and infant health in child development, the comparative influence of family and neighborhood in later well being, and the long-term effects of poverty reduction. Issues of organization of research, gaps in the data, and productivity are discussed.
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              Data linkage infrastructure for cross-jurisdictional health-related research in Australia

              James Boyd, Anna M Ferrante, Christine O'Keefe … (2012)
              Background The Centre for Data Linkage (CDL) has been established to enable national and cross-jurisdictional health-related research in Australia. It has been funded through the Population Health Research Network (PHRN), a national initiative established under the National Collaborative Research Infrastructure Strategy (NCRIS). This paper describes the development of the processes and methodology required to create cross-jurisdictional research infrastructure and enable aggregation of State and Territory linkages into a single linkage “map”. Methods The CDL has implemented a linkage model which incorporates best practice in data linkage and adheres to data integration principles set down by the Australian Government. Working closely with data custodians and State-based data linkage facilities, the CDL has designed and implemented a linkage system to enable research at national or cross-jurisdictional level. A secure operational environment has also been established with strong governance arrangements to maximise privacy and the confidentiality of data. Results The development and implementation of a cross-jurisdictional linkage model overcomes a number of challenges associated with the federated nature of health data collections in Australia. The infrastructure expands Australia’s data linkage capability and provides opportunities for population-level research. The CDL linkage model, infrastructure architecture and governance arrangements are presented. The quality and capability of the new infrastructure is demonstrated through the conduct of data linkage for the first PHRN Proof of Concept Collaboration project, where more than 25 million records were successfully linked to a very high quality. Conclusions This infrastructure provides researchers and policy-makers with the ability to undertake linkage-based research that extends across jurisdictional boundaries. It represents an advance in Australia’s national data linkage capabilities and sets the scene for stronger government-research collaboration.
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                Author and article information

                Contributors
                Kerina H. Jones
                Journal
                Journal ID (nlm-ta): J Biomed Inform
                Journal ID (iso-abbrev): J Biomed Inform
                Title: Journal of Biomedical Informatics
                Publisher: Elsevier
                ISSN (Print): 1532-0464
                ISSN (Electronic): 1532-0480
                Publication date PMC-release: 1 August 2014
                Publication date (Print): August 2014
                Volume: 50
                Issue: 100
                Pages: 196-204
                Affiliations
                College of Medicine, ILS2, Swansea University, Swansea, Wales SA2 8PP, UK
                Author notes
                [* ]Corresponding author. Fax: + 44 (0) 1792 513430. k.h.jones@ 123456swansea.ac.uk
                Article
                Publisher ID: S1532-0464(14)00004-5
                DOI: 10.1016/j.jbi.2014.01.003
                PMC ID: 4139270
                PubMed ID: 24440148
                SO-VID: 0966932d-0c4d-4709-8f14-be5f81550c18
                Copyright © © 2014 The Aurthors
                License:

                This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/3.0/).

                History
                Date received : 26 July 2013
                Date accepted : 7 January 2014
                Categories
                Subject: Article

                Keywords: aix, advanced interactive executive,alf, anonymous linking field,cipher, centre for the improvement of population health through e-records research,db2, a family of database server products developed by international business machines (ibm),dp, data provider,https, hypertext transfer protocol secure,igrp, information governance review panel,lsoa, lower super output area,nhs, national health service,nwis, nhs wales informatics service,ralf, residential anonymous linking field,sail, secure anonymised information linkage,sql, structured query language,ukserp, uk secure research platform,vpn, virtual private network,data linkage,remote access system,privacy-protection,e-records research
                Data availability:
                Keywords: aix, advanced interactive executive, alf, anonymous linking field, cipher, centre for the improvement of population health through e-records research, db2, a family of database server products developed by international business machines (ibm), dp, data provider, https, hypertext transfer protocol secure, igrp, information governance review panel, lsoa, lower super output area, nhs, national health service, nwis, nhs wales informatics service, ralf, residential anonymous linking field, sail, secure anonymised information linkage, sql, structured query language, ukserp, uk secure research platform, vpn, virtual private network, data linkage, remote access system, privacy-protection, e-records research

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