HLA PD Day 18 July 2016
•Als PPTX, PDF herunterladen•
1 gefällt mir•716 views
Presentation given by Kate LeMay to the Health Libraries Australia Professional Development Day on 18th July 2016 at the Kolling Institute, Sydney
Empfohlen
Empfohlen
Weitere ähnliche Inhalte
Was ist angesagt?
Was ist angesagt? (20)
Ähnlich wie HLA PD Day 18 July 2016
Ähnlich wie HLA PD Day 18 July 2016 (20)
Mehr von ARDC
Mehr von ARDC (20)
Kürzlich hochgeladen
Kürzlich hochgeladen (20)
HLA PD Day 18 July 2016
- 1. Kate LeMay Common (and curly) questions about sharing health/medical data Senior Research Data Specialist 18 July 2016
- 2. The Australian National Data Service (ANDS) makes Australia’s research data assets more valuable for researchers, research institutions and the nation.
- 3. http://www.ands.org.au/guides/sensitivedata Guide Conditional access Ownership Licensing Repositories How to confidentialise Ethics and consent Sharing Health-y Data: Challenges and Solutions
- 4. Sharing Health-y Data: Challenges and Solutions 2015-2016 FAQs from discussion & feedback ~450 professionals Answers
- 5. National Statement on Ethical Conduct in Human Research Australian Code for Responsible Conduct of Research NHMRC Statement on Data Sharing (2015) New Human Research Ethics Application (HREA – replaces NEAF) Institutional guidelines vary How do ethical/institutional guidelines support/conflict with sharing data?
- 6. What licence options are suitable for shared sensitive health data?
- 7. AusGOAL licensing framework • Six Australian Creative Commons (CC) Version 4.0 licences • Restrictive Licence Template (RLT) • BSD 3-Clause Software Licence ANDS endorses AusGOAL Wide support by Federal and State Governments http://www.ausgoal.gov.au
- 8. Licensing and data NOT FOR DATA Slide is courtesy of Baden Appleyard – Director of AusGOAL
- 9. When CC licence not suitable Restrictive Licences can ‘bespoke’ your conditions of access and use http://www.ausgoal.gov.au/restrictive- licence-template *Check with your DM support, School/Department/Institution to see if one already exists for you to repurpose
- 10. How to apply a licence? • Ownership • IP policies • Collaborations: agree – before collecting the data • Apply the marking (image) and/or statement • Make it visible on the document, repository record, and/or attached to the data
- 11. How can data be shared if it is combined from multiple (health) sources?
- 12. Where does human data sit within the open access agenda?
- 13. What about selective sharing of data?
- 17. What about sharing data that can’t be de-identified? healthtalkaustralia.org Informed consent
- 18. Personal Genome Project http://www.personalgenomes.org/ Some useful articles about informed consent for open genomic data http://arep.med.harvard.edu/pdf/Lunshof08.pdf http://lsspjournal.springeropen.com/articles/10.1186/s40504-014-0020-9 http://genomesunzipped.org/2010/10/why-public-genomics-is-not-a- purely-personal-decision.php#more-1186 Open consent for genomic data
- 19. Take away Informed consent Researchers have control • Licences • Mediated access Published/shared is NOT the same as open
- 21. Senior Research Data Specialist kate.lemay@ands.org.au Kate LeMay With the exception of logos, third party images or where otherwise indicated, this work is licensed under the Creative Commons Australia Attribution 3.0 Licence. ANDS is supported by the Australian Government through the National Collaborative Research Infrastructure Strategy Program. Monash University leads the partnership with the Australian National University and CSIRO.