Licensing health data to enable reuse
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1) A data licence sets out how data can be reused and attributed. It is recommended that all data intended for reuse have a licence, whether open or restrictive, to promote safe and proper reuse. 2) The Creative Commons suite of licences are commonly used with 6 options ranging from most open to most restrictive. The CC BY licence allows for reuse and redistribution with attribution. 3) Applying a clear licence to data promotes safe data sharing and prevents unintended misuse by clarifying how others can access and use the data.
![Reusing health data
14
• What can I do with it?
• Check 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
‘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/’](https://image.slidesharecdn.com/20150917licensing-160401035513/85/Licensing-health-data-to-enable-reuse-14-320.jpg)
Licensing health data to enable reuse
- 1. Licensing Health and Sensitive Data Gerry Ryder & Sarah Olesen, ANDS Publishing & Sharing Health-y Data Seminar, 17 Sept, 2015 1
- 2. What is a data licence? 2 • A licence sets out how data can be (re)used and attributed • All Australian data intended for reuse should have a licence
- 3. What is a data licence? 3 • 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
- 4. What is a data licence? 4 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. Screenshot from: researchdata.ands.org.au
- 5. Why apply a licence? 5 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 •Promotes re-use and enables collaboration
- 6. How do I choose the right one? 6 • 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
- 7. How do I choose the right one? 7 • 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
- 8. Open 8 • What is Open Access? ( http://www.ands.org.au/discovery/opendata.html) • 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
- 9. 9 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?
- 10. 10Screenshot from http://libguides.library.curtin.edu.au/ ‘Conditional access’ Open Closed Options when OA is not appropriate
- 11. Options when OA is not appropriate 11 • 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 • Reduced version of the data open, more detail available by request • Need for a ‘Restrictive Licence’
- 12. Restrictive Licence 12 • Like CC licences, it sets out conditions of re-use and redistribution • You can ‘bespoke’ your conditions See: 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
- 13. How do I apply a licence? 13 • 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
- 14. Reusing health data 14 • What can I do with it? • Check 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 ‘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/’
- 15. Take away 15 • 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
Editor's Notes
- #3: Image from: http://www.arthurweill.fr/Unsplash-results/en/13/CAR under CC-0 licence
- #5: Screenshot from: researchdata.ands.org.au
- #6: Image: keenetrial.com
- #7: Image: www.grtcorp.com
- #8: Image: www.grtcorp.com
- #9: Image: www.bethkanter.org
- #10: Image: www.getthefive.com
- #16: Image from: http://www.arthurweill.fr/Unsplash-results/en/24/COFFEE under CC-0