Licensing Health and Sensitive Data Dr Jeff Christiansen, Intersect | med.data.edu.au Publishing & Sharing Health-y Data Seminar, 26 Nov

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

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

Open 6 What is Open Access 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 Government agency data is: “Open by default” “Protected where required” “Discoverable” “Usable”

NSW Government agency data is: “Open by default” “Protected where required” * “Discoverable” “Usable” * - 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

What is a data licence? 9

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What is a data licence? Licences come in various forms, from few to many restrictions Recommend Creative Commons suite – 6 licences All CC licences allow some form of redistribution

What is a data licence? 12 Licences come in various forms, from few to many restrictions Recommend Creative Commons suite – 6 licences 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

What is a data licence? 13 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

Why apply a licence? 14 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? 15 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

16 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 Screenshot from ‘Conditional access’ OpenClosed Options when OA is not appropriate

18 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) e.g. YODA Project Reduced version of the data open, more detail available by request Need for a ‘Restrictive Licence’

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

AusGOAL Restrictive Licence 20 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 21 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 22 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? 23 As simple at applying the marking (image) and/or statement 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 24 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 data/index.html 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,

Take away 25 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