Presentation given by Kate LeMay to the Health Libraries Australia Professional Development Day on 18th July 2016 at the Kolling Institute, Sydney

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

20. http://www.ands.org.au/working-with-data/enabling-data-reuse/medical-and-health

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.