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Ymchwil gymdeithasol Social research Rhif/Number: 26/2014 Recommendations for Improving Research Access to Potentially Disclosive Data Author Tanvi Desai London School of Economics Views expressed in this report are those of the researcher and not necessarily those of the Welsh Government) For further information please contact: Sarah Lowe Knowledge and Analytical Services Welsh Government Cathays Park Cardiff CF10 3NQ Tel: 02920 826229 Email: [email protected] Welsh Government Social Research, 2014 ISBN: 978-1-4734-1083-1 © Crown Copyright 2014 Table of Contents Glossary ..................................................................................................................... 3 1. Introduction .......................................................................................................... 4 2. Methods .............................................................................................................. 6 3. Data Access Landscape ...................................................................................... 8 International Landscape ....................................................................................... 11 UK Landscape ...................................................................................................... 12 4. Legal and Ethical Considerations ...................................................................... 15 Data sharing ......................................................................................................... 17 Data linking ........................................................................................................... 17 Data access .......................................................................................................... 19 Public Opinion....................................................................................................... 19 5. Implementation and Funding ............................................................................. 22 6. Maximising availability ....................................................................................... 25 Data Management ................................................................................................ 26 Contractor Management ....................................................................................... 29 Administrative data ............................................................................................... 30 Data Linking .......................................................................................................... 33 Data Acquisition .................................................................................................... 35 Summary .............................................................................................................. 36 7. Maximising Access ............................................................................................ 38 Data Discovery ..................................................................................................... 38 Data Access Solutions .......................................................................................... 39 Stakeholder Access .............................................................................................. 51 Summary .............................................................................................................. 57 8. Conclusion and Recommendations ................................................................... 59 Appendix A: Sources of information for Data Audit .................................................. 63 Appendix B: Data requested by stakeholders .......................................................... 63 Appendix C: An outline of the characteristics of European RDCs ............................ 67 Appendix D: UK Data Archive .................................................................................. 70 References ............................................................................................................... 72 2 Glossary ADT Administrative Data Taskforce ADRN Administrative Data Research Network ADRC Administrative Data Research Centre ADLS Administrative Data Liaison Service AFON Access File ON-line BIL Business Impact Level CESG Communications-Electronics Security Group DEWI Data Exchange Wales Initiative DMP Data Management Policy DPA Data Protection Act DwB Data without Boundaries DWP Department for Work and Pensions ESRC Economic and Social Research Council EUL End User License FOI Freedom of Information GSS Government Statistical Service HMRC Her Majesty's Revenue and Customs ICO Information Commissioner's Office IL Impact Level (See Business Impact Level) ISO International Organization for Standardization KAS Knowledge and Analytical Services (WG) LS Longitudinal Study of England and Wales MoJ Ministry of Justice NHS National Health Service NILS Northern Ireland Longitudinal Study NWIS NHS Wales Informatics Service ONS Office for National Statistics PC Personal Computer PGP Pretty Good Privacy RDC Research Data Centre SAIL Secure Anonymised Information Linkage SDS Secure Data Service SHIP ScottisH Informatics Programme SL Special License SLS Scottish Longitudinal Study SRSA Statistics and Registration Services Act 2007 UK United Kingdom UKDS UK Data Service VML Virtual Microdata Laboratory WG Welsh Government WISERD Wales Institute for Social and Economic Research Data and Methods 3 1. Introduction Due to a long-standing collaboration between the academic funding councils and government, the UK has one of the oldest, best established infrastructures for providing research access to microdata in the world. UK researchers in academia and government have long taken advantage of the wealth of available data to produce internationally respected, policy relevant research. However, in recent years, new guidelines for government data handling combined with economic pressures have created a tension between the need to maximise returns to investment in data collection, and the obligation to ensure absolute confidentiality to respondents. This tension increases the urgency for government bodies to have a comprehensive overview of data resources under their control in order to understand the level of sensitivity of each resource; for reassurance that access policies conform to legislative and ethical standards; and to enable assessment of whether these resources can be more fully exploited. To address this challenge the Welsh Government (WG) and the Economic and Social Research Council (ESRC) have jointly funded four fellowships with the aim of obtaining a set of recommendations on strategies for maximising returns to investment in microdata resources. This report is the result of the Fellowship on Improving Access to Potentially Disclosive Data. There are many other projects underway that will impact the recommendations in this paper including Data without Boundaries (DwB)1, Beyond 20112, and ESRC Big Data Network3. The Administrative Data Research Network (ADRN) recommended by the Administrative Data Taskforce (ADT)4 has been referred to extensively in the text below as it is likely to have a significant impact on access to all potentially disclosive data in the UK, not just administrative data. 1 http://www.dwbproject.org/ 2 http://www.ons.gov.uk/ons/about-ons/what-we-do/programmes---projects/beyond-2011/index.html 3 http://www.esrc.ac.uk/news-and-events/announcements/25683/big-data-investment-capital-funding.aspx 4 http://www.esrc.ac.uk/funding-and-guidance/collaboration/collaborative-initiatives/Administrative-Data- Taskforce.aspx 4 This report will provide an outline of the methods used for the project, before giving an overview of current data access infrastructure in the UK and Europe. This will be followed by an outline of the legal and ethical issues that should be taken into consideration when developing plans to maximise access to potentially disclosive microdata and some comments on implementation and funding. The paper will then examine strategies for maximising the availability of, and access to microdata, before concluding with recommendations. The Welsh Government’s commitment to maximising returns to investment in data collection is a significant step towards efficiency and cost-effectiveness. With this in mind strategies that make use of existing infrastructure such as the UK Data Service (UKDS), the government Research Data Centres and SAIL will be prioritised, and where possible, solutions are based around these pre-existing facilities. Where the existing infrastructure and support systems are inadequate, solutions will be put forward based on international best practice. 5 2. Methods The aim of the Knowledge Transfer Fellowship was to enable the Welsh Government to draw on the expertise developed by the Fellow in the area of secure data access. In order to frame any recommendations it was first necessary to identify the needs of WG Knowledge and Analytical Services (KAS) and other researchers investigating Wales, therefore a stakeholder consultation was undertaken. The consultation consisted of both face to face interviews and requests for feedback via email and the web. Twenty-eight face to face interviews were carried out, including with twelve KAS analysts, six academic researchers, and six data sharing specialists from other government departments, two third sector researchers, and two managers of data access infrastructures. In addition a presentation was made to the Welsh Statistical Liaison
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