Experiences from the Social Sciences - possible links to Health Data?

Transcription

1 Bjørn Henrichsen Experiences from the Social Sciences - possible links to Health Data? BIOBANK Conference

2 1968: Initial Motivation for a Central Data Service Establish a computing service for social sciences at the four Norwegian universities Discover existing databases, make them accessible, establish new databases, and archive data from research projects Make tools for scientific analysis available for the social sciences 2

3 NSD s Five Phases The starting point; A loose collaboration established by NAVF Pilot; A firmer organized pilot project funded by NAVF Project funded by NAVF Permanent organ under NAVF/RC Norway 2003 Legal unit owned by the Ministry of Education and Research 3

4 Facts About NSD What? One of the world s largest data archives and data services to the research sector A resource centre that provides guidance for researchers and students in the fields of data collection, data analysis, data methodology, protection of privacy and research ethics Main funding: Research Council of Norway Ministries EC Higher education sector Public and private clients Sales revenues 80+ employees Why? Improve opportunities and working conditions for Norwegian empirical research Remove financial, technical, knowledgebased, legal and administrative barriers between users and data resources 4

5 NSD s Resources Statistics Norway Research institutions Research projects from universities and university colleges Norwegian Surveys European Social Survey International Social Survey Programmes Value studies Health Behaviour among School-aged Children International Surveys National Insurance System, the Social Welfare, and the Labour Market Regular GP Scheme Patient Ombudsman System Generation Database Census Data Bank Data from Registers Regional Database Censuses Elections, censuses and migrations in the Nordic countries Regional Data Database for Statistics on Higher Education (DBH) Innovation Norway Ecclesiastical Database Institutional Data Norwegian Parliament Government Parties Detailed overview of the Norwegian state administration after the Second World War Nesstar NSDstat WebSurvey 150 institutions Approve projects in advance Assistance in institutions internal control Information and training Data on Political System Data on the Norwegian State Administration Software Development Research and Privacy 5

6 The Norwegian Experiences = Collaboration Research Council of Norway Funding of existing archives and new data sources that contains data on individuals, regions, and political and administrative systems Data Protection Agency NSD as a broker between the Agency and the scientific community. Today NSD function as Data Protection Official for research for 150 institutions Statistics Norway Since 1976, a formal agreement on dissemination of data for research purposes. Allowing for extensive use of aggregated and individual data; for instance surveys and register data Research Community Close contact with researchers in different scientific fields The National Archives of Norway Since 2014 a formal agreement on archiving of research data. Built on decades of informal cooperation. 6

7 NSD as a Link to International Data International Cooperation and Data Sources European Social Survey (ESS) International Social Survey Programme (ISSP) Health Behaviour among School-aged Children (HBSC) European Election Data (EED) EUROSPHERE CESSDA ICPSR DDI IFDO IASSIST 7

8 International Cooperation Important Tasks and Objectives Open access to data and metadata across national and language boundaries Development of tools and methods for effective data transfer and access Zentralarchiv, Germany UK Data Archive, United Kingdom Steinmetz Archive, the Netherlands NSD, Norway BASS, Belgium ADPSS, Italy + ICPSR, Ann Arbor (1962) Committee of Social Science Data Archives CESSDA (1976) International Federation of Data Organisations 8

9 CESSDA Milestones CESSDA as a Legal Institution Steering Committee Agreed on Documents MoU 14 Countries MoU 12 Countries CESSDA ERIC Formal Process June 2013 EC Preparatory Phase Project ESFRI Roadmap Formalized CESSDA April 1992, Limerick May 31 st / June 1 st 1976, Amsterdam ZA, UKDA, DDA, Steinmetz, BASS, NSD, ADPSS 9

10 Before June 2013: CESSDA as an Umbrella Organisation 10

11 After June 2013: CESSDA as pan-european Research Infrastructure 11

12 To Make Distributed Facilities Function Cooperation Utilization Cooperation between both existing and emerging research infrastructures is particularly Utilization Standardization of important data is depended within the onsocial establishing sciences of standards humanities for processing, where the strength of documenting, the infrastructure and storing lies indata, the collective developing rather procedures than thefor individual. servicing the needs of users, Interoperability and disseminate information relevant to the users Standardization of data and metadata is necessary to encourage data sharing and interoperability across communities and software systems Overcoming Harmonization the language barriers becomes an essential need. Data should consequently be created, described, and preserved in ways that facilitate use for a variety Accessibility One major of purposes obstacle to the access to official empirical statistical data across Europe is the multitude of data access policies and regulations. In order to make it easier to bring Crucial together importance datathat fromdata various resources countries cana be harmonization found and even of data accessed through policies should central be web-based implemented cataloguing and location services 12

13 What are the Basis for Data Archives? Data Data Sharing Metadata Tools 13

14 What is ESFRI? Set up by the European Research Ministers (EU and beyond) and the European Commission 2 delegates for each European country representing their Ministers One delegate from the European Commission Secretariat at the European Commission (DG Research) Support a coherent approach to policy making on research infrastructures in Europe Functioning as a incubator for international negotiations for concrete initiatives within the area (coordination and pooling of national and international resources) Roadmap for research infrastructures 14

15 ESFRI Milestones 2006: European Roadmap for Research Infrastructures (35 Research Infrastructure Proposals 6 SSH) 2008: Update of the European Roadmap for Research Infrastructures (44 Research Infrastructure Proposals 5 SSH) 2009: Roadmap Implementation Report (status of the Roadmap Projects and their implementation) 2011: 2nd update of the European Roadmap for Research Infrastructures with invited proposals for research infrastructures in Energy and Food, Agriculture and Fisheries, Biotechnology 15

16 ESFRI 48 Research Infrastructures either implemented or still on the Roadmap 16

17 ESFRI Social Sciences Research Infrastructures CESSDA Council of European Social Science Data Archives ESS European Social Survey SHARE Survey on Health, Ageing and Retirement in Europe Success stories; implemented as institutions 17

18 Infrastructural Systems BIOMEDBRIDGES Building Data Bridges between Biological and Medical Infrastructures in Europe DASISH - Data Service Infrastructure for the Social Sciences and Humanities ENVRI Common Operations of Environmental Research Infrastructures TO-DAY CRISP Cluster of Research Infrastructures for Synergies in Physics 18

19 Infrastructural Systems BIOMEDBRIDGES Building Data Bridges between Biological and Medical Infrastructures in Europe DASISH - Data Service Infrastructure for the Social Sciences and Humanities ENVRI Common Operations of Environmental Research Infrastructures COOPERATION ACCESSIBILITY TOMORROW INTEROPERABILITY STANDARDIZATION HARMONIZATION CRISP Cluster of Research Infrastructures for Synergies in Physics UTILIZATION 19

20 Infrastructural Systems BIOMEDBRIDGES Building Data Bridges between Biological and Medical Infrastructures in Europe New RI New RI New RI New RI DASISH - Data Service Infrastructure for the Social Sciences and Humanities New RI COOPERATION ACCESSIBILITY ENVRI Common Operations of Environmental Research Infrastructures THE DAY AFTER TOMORROW INTEROPERABILITY New RI CRISP Cluster of Research Infrastructures for Synergies in Physics STANDARDIZATION HARMONIZATION UTILIZATION New RI New RI New RI New RI 20

21 An Example: European Social Survey (ESS) A research infrastructure Building partly on standards, tools etc. developed by the CESSDA partners In addition: Russia Ukraine Israel 21

22 European Social Survey (ESS) Academically driven cross-national survey that has been conducted every two years across Europe since 2001 From November 2013 as an European Research Infrastructure Consortium (ERIC) The main aims of the ESS are: to chart stability and change in social structure, conditions and attitudes in Europe and to interpret how Europe s social, political and moral fabric is changing to achieve and spread higher standards of rigour in cross-national research in the social sciences, including for example, questionnaire design and pre-testing, sampling, data collection, reduction of bias and the reliability of questions to introduce soundly-based indicators of national progress, based on citizens perceptions and judgments of key aspects of their societies to undertake and facilitate the training of European social researchers in comparative quantitative measurement and analysis to improve the visibility and outreach of data on social change among academics, policy makers and the wider public 22

23 European Social Survey (ESS) Downloads until May 2014 Students Faculty and research 9728 Ph.d. thesis Private individual Organisation (ngo) 727 Government 720 Other Total registered users: 69,560 Total downloads: 45,

24 European Social Survey (ESS) Round 7 has just started. One of the modules: Health, health inequality and social determinants Health inequality Social determinants of health Explanations of health and health inequalities Tackling inequalities in health 24

25 What Makes the Social Sciences Different? The Social Science Data Archives have a long and strong tradition in national and international cooperation The Social Sciences have built basic data holdings of general importance for many scientific fields The Social Sciences have culture for sharing data The Social Sciences have established service institutions that are concentrating on making data available for the research community The Social Sciences data archives do not perform research themselves and are therefore not competing with their users The Social Sciences are in many respects a forerunner in Establishing equal services to all users Making data easily available Producing high quality data and metadata Ensuring privacy and data protection Giving the researchers access to international data holdings 25