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This Project Has Received Funding from the European Union's Horizon Deliverable Number: D6.6 Deliverable Title: Report on legal and ethical framework and strategies related to access, use, re-use, dissemination and preservation of administrative data Work Package: 6: New forms of data: legal, ethical and quality matters Deliverable type: Report Dissemination status: Public Submitted by: NIDI Authors: George Groenewold, Susana Cabaco, Linn-Merethe Rød, Tom Emery Date submitted: 23/08/19 This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 654221. www.seriss.eu @SERISS_EU SERISS (Synergies for Europe’s Research Infrastructures in the Social Sciences) aims to exploit synergies, foster collaboration and develop shared standards between Europe’s social science infrastructures in order to better equip these infrastructures to play a major role in addressing Europe’s grand societal challenges and ensure that European policymaking is built on a solid base of the highest-quality socio-economic evidence. The four year project (2015-19) is a collaboration between the three leading European Research Infrastructures in the social sciences – the European Social Survey (ESS ERIC), the Survey for Health Aging and Retirement in Europe (SHARE ERIC) and the Consortium of European Social Science Data Archives (CESSDA AS) – and organisations representing the Generations and Gender Programme (GGP), European Values Study (EVS) and the WageIndicator Survey. Work focuses on three key areas: Addressing key challenges for cross-national data collection, breaking down barriers between social science infrastructures and embracing the future of the social sciences. Please cite this deliverable as: Groenewold, G., Cabaco, S., Rød, L.M., Emery, T., (2019) Report on legal and ethical framework and strategies related to access, use, re-use, dissemination and preservation of administrative data. Deliverable 6.6 of the SERISS project funded under the European Union’s Horizon 2020 research and innovation programme GA No: 654221. Available at: wwwww.seriss.eu/resources/deliverables www.seriss.eu/resources/deliverables Content 1 Introduction ........................................................................................................................ 4 2 Frameworks for Administrative Data Use ........................................................................... 8 Single access research projects ........................................................................................ 9 Data Access Infrastructure .............................................................................................. 14 Integration in social surveys processes ........................................................................... 24 Infrastructures with statistical disclosure controls ............................................................ 28 3 Legal and ethical challenges related to use and re-use of administrative data ................. 33 Informed consent issues .................................................................................................. 33 Legal grounds other than consent ................................................................................... 33 Broad consent ................................................................................................................. 34 Information to the data subjects ....................................................................................... 35 Withdrawal of consent ..................................................................................................... 37 Records of consent.......................................................................................................... 38 Definitions of anonymisation versus pseudonymisation ................................................... 38 Are pseudonymised data always personal data? ............................................................. 39 Indirectly identifiable data ................................................................................................ 40 4 Conclusions and Recommendations ................................................................................ 41 References ......................................................................................................................... 42 Annex 1: Annotated bibliography ........................................................................................ 47 www.seriss.eu GA No 654221 3 1 Introduction Administrative data sources are increasingly being made available for research purposes. The increased use of administrative data sources as a basis for survey sampling methodologies widen the scope and capacity for linking administrative data and survey data for research purposes. Furthermore, the potential for such linkage is enhanced by the bridging of scientific and civil service data infrastructures and the deeper integration of science and the policy making process. By linking data, policy makers can validate their data with scientifically driven measures and social scientists can better engage in questions with direct relevance for policy makers. This potential is not easily realised however. The data infrastructures of administrative data sources and social surveys are generally governed by different laws, different ethical practices and different priorities and purposes. Operating across these differences poses several challenges. Building on task 6.2 and Work package 6 in the SERISS project, this report addresses the legal requirements and ethical challenges in linking administrative data and survey data. This document is the output of deliverable 6.6 that aims to provide an overview of administrative data usage in Social Science Research in Europe, and specifically in survey research. Work Package 6 of the SERISS project addresses the major legal and ethical challenges facing cross-national social science research which relies on access to large-scale data on an individual level. The focus is on social surveys and the use of new data types in a social survey context in particular, including biomarker, social media data and administrative data. The focus of Task 6.2 was the legal requirements and ethical challenges that may come about when survey data are linked with administrative data sources. The task addresses the issues that need to be taken to meet these challenges in order to increase and improve the research use of these data sources1. The main purpose of this report was to provide an overview of the legal and ethical issues in, and to overcome possible barriers to, research use of administrative data. As such this deliverable is aimed at researchers and infrastructures managing new forms of data. Administrative data can be defined as the “information collected primarily for administrative purposes […] collected by government departments and other organizations for registration, transactions and record keeping”2. The value of micro-level administrative data for social science empirical research and public policy evaluation has been extensively recognized in different sectors, given the rich demographic and socio-economic information recorded (Connelly et al., 2016; Card et al., 2010). More specifically, there are crucial differences between survey microdata and administrative data, well summarized by Card et al. (2010). First, administrative data covers (significantly) 1 European Commission, Directorate-General for Research and Innovation (2016: 45). 2 See https://adrn.ac.uk/for-the-public/faq/about-the-data/. www.seriss.eu GA No 654221 4 larger proportions of the population – in some instance’s full population records3 (as in population registers) - when compared to most social surveys. It is easily apparent why larger samples are very attractive to researchers: a good example could be the study of factors associated with educational attainment among specific social groups (e.g. ethnic minorities) in small geographical areas or instances of rare behaviors or population characteristics. Secondly, most administrative data have a longitudinal structure that allows researchers to include a time dimension in their analysis4 and, for example, track long-term effects of certain events (illness, job loss, etc.) or evaluate the pre and post policy implementation contexts in a given area. These authors also argue that administrative data provide higher quality information when compared to most survey sources (which tend to be more prone to non-response, attrition and other types of measurement bias), covering also areas that are not included in social surveys (Card et al., 2010). However, administrative data sources are not primarily collected or oriented towards specific scientific research purposes and might even require some data preparation (e.g. constructing and recoding variables) before the analysis. The use of administrative data linked to surveys in social science research, despite not being widespread, has been increasingly recognized as a good research practice (Card et al., 2010; Connelly et al., 2016; Poulain and Herm, 2013). Several researchers and organizations have indeed advocated for the development and expansion of access to administrative microdata, given that it is “critical for cutting-edge empirical research” (Card et al., 2010: 1). In particular, when administrative data is linked to survey data, there is the potential added benefit of data validation, i.e. the researcher can use the survey data in order to assess the accuracy of the administrative data records. Furthermore,
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