Presentation by Dr Jeff Christiansen, Intersect. Presented at the ANDS/Intersect sharing health-y data: challenges and solutions II workshop on 26th October 2016

1. Licensing Health and Sensitive Data
Dr Jeff Christiansen, Intersect | med.data.edu.au
Publishing & Sharing Health Data Seminar, 26 Oct 2016
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2. med.data.edu.au

3. med.data.edu.au

4. What is a data licence?
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• A licence sets out how data can be
(re)used and attributed
• All Australian data intended for
reuse should have a licence

5. 5
‘Open / Shared / Closed: The world of data’
CC-BY-SA Open Data Institute link
https://vimeo.com/125783029
Open Access vs. Conditions to access

6. Open
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• What is Open Access Data?
http://www.ands.org.au/working-with-data/articulating-the-value-of-open-data/open-data
• Freely available to download in a reusable form
• No/minimal restrictions
…ness?
• Why?
• Support key research values of
verification, replication,
transparency, collaboration,
innovation, efficiency…
• Make your data discoverable,
citable

7. NSW Government
agency data is:
•Open by default,
protected where required
•Prioritised, discoverable and usable
•Primary and timely
•Well managed, trusted and
authoritative
•Free where appropriate
•Subject to public input https://www.finance.nsw.gov.au/ict/resources/nsw-

8. * - privacy – where personal information is involved;
security – because of the nature of the data or information;
confidentiality – arising because of the nature of the data or
information itself or because a contractual promise has been
made in relation to the data or information
NSW Government
agency data is:
•Open by default,
protected where required*
•Prioritised, discoverable and usable
•Primary and timely
•Well managed, trusted and
authoritative
•Free where appropriate
•Subject to public input

9. What is a data licence?
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https://www.finance.nsw.gov.au/ict/resources/open-access-and-licensing-framework

10. What is a data licence?
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http://www.ausgoal.gov.au/

11. What is a data licence?
• Licences come in various forms, from few to many restrictions
• Recommend Creative Commons suite – 6 licences
• http://www.ausgoal.gov.au/creative-commons-v4.0
• All CC licences allow some form of redistribution

12. What is a data licence?
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• Licences come in various forms, from few to many restrictions
• Recommend Creative Commons suite – 6 licences
• http://www.ausgoal.gov.au/creative-commons-v4.0
• All CC licences allow some form of redistribution
Attribution
CC BY
Attribution-ShareAlike
CC BY-SA
Attribution-NoDerivatives
CC BY-ND
Attribution-NonCommercial
CC BY-NC
Attribution-NonCommercial-ShareAlike
CC BY-NC-SA
Attribution-NonCommercial-NoDerivatives
CC BY-NC-ND

13. What is a data licence?
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http://creativecommons.org/licenses/by/4.0/deed.en
CC BY (Attribution)
You are free to:
Share — copy and redistribute the material in any medium or format
Adapt — remix, transform, and build upon the material
for any purpose, even commercially.
As long as you attribute the data provider (in accordance with their instructions)
Screenshot from: researchdata.ands.org.au

14. Why apply a licence?
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If you plan to share data ….
• Without a licence, it is unclear how the data can be re-used
• This may discourage re-use and inadvertently lead to
misuse/misattribution
• Using a licence promotes re-use and
enables collaboration

15. How do I choose the right one?
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• To apply a license you must have the rights to do so
• Are you the ‘owner’?
• Choose least restrictive / most open licence that is appropriate
for your data
• CC-BY is recommended unless there are legal, ethical and/or
other compelling reasons not to
http://www.ausgoal.gov.au/the-ausgoal-licence-suite

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Consider:
1. Potential for identification (ref Privacy Law
and other policies you are bound by)
- Can/are data confidentialised?
2. Potential for harm/discrimination
3. Participant consent – Given? For what?
4. HREC approval?
5. What re-use, re-distribution,
commercialisation, purposes are you happy
with? Are ethical?
How open can I be?

17. 17Screenshot from http://libguides.library.curtin.edu.au/
‘Conditional access’
Open Closed
Options when OA is not appropriate

18. Options when OA is not appropriate
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• Conditional access
• Metadata record is open, publically discoverable
• Access to data is conditional
• Typically, access by registration or application
• Australian Data Archive, Institutional repositories
• e.g. YODA Project (Yale University Open Data Access in
Clinical Research)
• Reduced version of the data open, more detail available by request
• Need for a ‘Restrictive Licence’

19. Restrictive Licence
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• Like CC licences, it sets out conditions of re-use and redistribution
• You can ‘bespoke’ your conditions

20. AusGOAL Restrictive Licence
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• http://www.ausgoal.gov.au/restrictive-licence-template
The Restrictive Licence Template (RLT) has been developed specifically
for material that may contain personal or other confidential
information
The RLT has two parts: the Main Part and the Schedule. The Main Part
contains all of the relevant standard clauses and should not be
edited. The Schedule contains information unique to the transaction
and allows users to activate or deactivate clauses in the Main Part.

21. AusGOAL Restrictive Licence
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You are free to:
• to acquire the material according to the terms you have agreed to with the supplier
• to use and modify the material according to the terms you have agreed to with the
supplier
• to do other things with the material according to the terms you have agreed to with the
supplier
You are required:
• to protect confidential information according to the use constraints and protective terms
you have agreed to with the supplier
• to protect personal information according to the use constraints and protective terms
you have agreed to with the supplier
• to comply with additional conditions that you have agreed to with the supplier.
You are not permitted:
• to share, to copy, distribute and transmit this material unless the supplier has expressly
agreed that you can do this
• to commercialise you may not use this material for commercial purposes unless the
supplier has agreed that you can do this

22. AusGOAL Restrictive Licence
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• http://www.ausgoal.gov.au/restrictive-licence-template
• Can add/remove sections
• Have finalised by your Legal Office
*Check with your DM support, School/Department/Institution to see if
one already exists for you to repurpose

23. How do I apply a licence?
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• As simple at applying the marking (image) and/or statement
• http://creativecommons.org/about/downloads
• http://www.ausgoal.gov.au/sample-copyright-notices
• Make it visible on the document, record, and/or attached to the data
This work is licensed under a Creative Commons Attribution
4.0 International License

24. Reusing health data
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• What can I do with it?
• Check the licence terms. These will also affect whether or not, and
how, you can make data available to others at the end of your
project.
• Attribute (i.e., cite) your source
http://www.ands.org.au/cite-data/index.html
e.g. ‘Ford, J. (2015) Collection for the PALS (Pregnancy and Lifestyle Study), a
community- based study of lifestyle on fertility and reproductive outcome,
[dataset], University of South Australia,
http://researchoutputs.unisa.edu.au/11541.1/’

25. Take away
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• Take control of your data assets! Be clear
about who may reuse your data and for
what purpose
• Consider conditional access when OA is not
appropriate
• Where no licence is applied, uncertainty
may lead to no reuse or inappropriate use
• Ensure you get the attribution you deserve