Licensing Health and Sensitive Data

Dr Jeff Christiansen, Intersect | med.data.edu.auPublishing & Sharing Health Data Seminar, 26 Oct 2016

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med.data.edu.au

med.data.edu.au

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

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‘Open / Shared / Closed: The world of data’CC-BY-SA Open Data Institute linkhttps://vimeo.com/125783029

Open Access vs. Conditions to access

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

NSW Governmentagency 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-government-open-data-policy

* - 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 Governmentagency 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

What is a data licence?

9https://www.finance.nsw.gov.au/ict/resources/open-access-and-licensing-framework

What is a data licence?

10http://www.ausgoal.gov.au/

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

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

AttributionCC 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

What is a data licence?

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http://creativecommons.org/licenses/by/4.0/deed.enCC BY (Attribution)

You are free to:

Share — copy and redistribute the material in any medium or formatAdapt — remix, transform, and build upon the materialfor any purpose, even commercially.As long as you attribute the data provider (in accordance with their instructions)

Screenshot from: researchdata.ands.org.au

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

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?

17Screenshot from http://libguides.library.curtin.edu.au/

‘Conditional access’

Open Closed

Options when OA is not appropriate

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’

Restrictive Licence

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

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.

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

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

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

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/’

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