Data sharing in EOSC-hub: perspectives on “sensitive” data
- 1. eosc-hub.eu @EOSC_eu EOSC-hub receives funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 777536. Perspectives on “sensitive” data Dr Rob Baxter, EPCC, the University of Edinburgh Dissemination level: Public
- 2. 2 0. *Title of your talk.* 1. A 1–2 sentence short self-intro so I can introduce you to the audience. 2. Let me know if there are any topics (in order of priority, since time is limited) that you would like the panel to discuss. 3. Share one piece of advice or nugget of wisdom that the audience can take home with them. 4. Come up with one question for another panelist. Your question will be anonymous :) 16/04/2019
- 3. 3 Working group on data sharing policy - Rob Baxter (EPCC) - Yin Chen, Yannick Legre (EGI.eu) - Ilona von Stein, Frans Huigen (DANS) - Susheel Varma (EMBL-EBI) - Serena Battaglia, Christian Ohmann (ECRIN) - Michaela Th. Mayrhofer (BBMRI) Jan 2019: R. Baxter et al, EOSC-hub D2.8: - First data policy recommendations Building on: - S. Battaglia et al, EOSCpilot D3.3: Draft Policy Recommendations - S. Hodson, S. Jones et al, European Commission Expert Group on FAIR Data, Turning FAIR into reality 16/04/2019 Background: EOSC-hub WP2.4
- 4. 4 Adopt 11 EOSCpilot recommendations… - (a lot of good work already done; don’t reinvent the wheel!) …as 22 practical suggestions for data sharing… - (what steps can EOSC-hub service providers start taking?) …best summarised as… 1. implement FAIR 2. build technical expertise in safe data and safe settings 3. support development of wider ethical and info gov frameworks 16/04/2019 D2.8 TL;DR
- 5. 5 Take a “Web first” approach Aim for good 3-star data * - open, non-proprietary, machine-readable formats Adopt resolvable persistent identifiers (PIDs) - PIDs point to landing pages (emerging good practice†) Standardise “findability” metadata - OpenAIRE & DataCite guidelines, plus a DataTag - embedded in landing pages using schema.org Share open data using CC 4.0 * cf. 5stardata.info † cf. www.freya-project.eu 16/04/2019 1. Implement FAIR
- 6. 6 FAIR ≠ Open, and not all data are open - EOSC-hub (and Europe) have an opportunity to lead the world in making sensitive data safely and ethically available for research Adopt the “5 safes” approach to data sharing: - safe data, safe settings, safe people, safe projects, safe outputs EOSC-hub should build expertise in “safe settings” - don’t send data to users, enable users to come to data - develop Safe Haven services (later) 16/04/2019 2. Safe data and safe settings
- 7. 7 EOSC-hub should support wider information governance needed for 5 safes - safe settings (services) & safe data (tags etc.) are not sufficient - safe people, safe projects, safe outputs need governance Engage in development of ethical oversight function - EOSCpilot’s suggested Ethics and Legal Advisory Board - part of “EOSC governance”? Engagement with European Data Protection Board? - should EOSC-hub propose a (“GDPR”) Code of Conduct? 16/04/2019 3. Ethics & info gov
- 8. 816/04/2019 A safe setting: the Scottish NDSH Analytics Zone Network DMZ Identifiable Zone De-identified Zone Loader Unmodified DICOM DICOM file anonymiser & server Metadata whitelister Identifiable metadata De-identified searchable metadata Cohort creation Extractor De-identified image cohort Researcher virtual desktop PACS ingest Data gateway Virtual desktop gateway Data landing zone Study-specific data cohort Linker Researcher Info Gov Team National PACS Firewall Study workspace
- 9. 916/04/2019 Scottish NDSH info gov De-Id svcs Information Governance Data Owner 2 Data Owner 1 Data Owner 3 NHS & other data owners EPCC hosted service National Registers of Scotland NHS eDRIS research coordination team Researcher De-Id svcs De-Id svcs no data transfer de-identified data identifiable data coordination interactions NDSH
- 10. 1016/04/2019 EOSC-hub Safe Haven info gov? De-Id svcs Information Governance Data Owner 2 Data Owner 1 Data Owner 3 Researcher De-Id svcs De-Id svcs no data transfer de-identified data identifiable data coordination interactions Safe Haven EOSC-hub services EOSC-hub serviceEOSC Governance? EOSC Governance?
- 11. 11 Safe settings are well developed in social science - and becoming joined up § e.g. International Data Access Network, https://idan.network In life sciences? - some regional/national safe haven services exist - does the model make sense (as a pattern for expansion)? - what about the suggestion: stop share-by-copy? - do we have the e-Infra in place? - how do we go about international info gov? - Codes of Conduct? Ethics and Legal Advisory Board? 16/04/2019 Final thoughts & questions
- 12. eosc-hub.eu @EOSC_eu Thank you for your attention! Questions?