brisbane health-y data: licensing health and sensitive data

Licensing Sensitive Data: Intros, Options, & Open-’ness’

Sarah Olesen (sarah.Olesen@biotext.com.au)

16 March 2016

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What is a 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

What is a licence?

3Screenshot from: researchdata.ands.org.au

What is a licence?

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Why apply a licence?

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• Promotes re-use and enables collaboration

• Gives owner control and credit

How do I choose the right one?

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1. To apply a license you must have the rights to do soAre you the ‘owner’? (see your local IP policies)

2. Choose ‘most open’ licence you can

Creative Commons suite – 6 licences http://www.ausgoal.gov.au/creative-commons-v4.0 All are ‘OPEN’ licences allow some form of redistribution,

more/less restrictions on changing the data and licensing derivative work

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Consent? (For what?)

Potential for harm/discrimination?

Data modified to address identification, limit harm?

HREC approval

How open can I be?

Spectrum of open-ness

8Screenshot from http://libguides.library.curtin.edu.au/

Open Closed

Conditional access

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‘Open / Shared / Closed: The world of data’CC-BY-SA Open Data Institute link

https://vimeo.com/125783029

Open Access vs. Conditions to access

When CC licence not suitable

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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

How do I apply a licence?

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• You must ‘own’ the data to apply the licence

• Look at your institution/s IP policies

• When partnering: agree – before collecting the data –who can apply the licence and what that licence will be.

• Include this info in HREC application

http://www.ands.org.au/datamanagement/sensitivedata.html

How do I apply a licence?

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• Just apply 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, repository record, and/or attached to the data

Take away

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• Take control! Be clear about who may reuse your data and for what purpose

• Where no licence is applied, uncertainty may lead to no reuse or inappropriate use

• Ensure you get the attribution you deserve

• Conditional access is a good option for sensitive health data

Gerry Ryder, ANDS e-RSA Seminar, Mar 26, 2015

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This work is licensed under a Creative Commons Attribution 4.0 International License

ANDS is supported by the Australian Government through the National Collaborative Research Infrastructure Strategy (NCRIS).