HLA PD Day 18 July 2016
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Kate LeMay Common (and curly) questions about sharing health/medical data Senior Research Data Specialist 18 July 2016
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Transcript of HLA PD Day 18 July 2016
Kate LeMay
Common (and curly) questions about sharing health/medical data
Senior Research Data Specialist
18 July 2016
The Australian National Data Service (ANDS) makes Australia’s research data assets more valuable for researchers, research institutions and the nation.
http://www.ands.org.au/guides/sensitivedata
Guide
Conditional access
Ownership
Licensing
Repositories
How to confidentialise
Ethics and consent
Sharing Health-y Data: Challenges and Solutions
Sharing Health-y Data: Challenges and Solutions
2015-2016
FAQs from discussion & feedback
~450 professionals
Answers
National Statement on Ethical Conduct in Human Research Australian Code for Responsible Conduct of Research
NHMRC Statement on Data Sharing (2015)
New Human Research Ethics Application (HREA – replaces NEAF)
Institutional guidelines vary
How do ethical/institutional guidelines support/conflict with sharing data?
What licence options are suitable for shared sensitive health data?
AusGOAL licensing framework
• Six Australian Creative Commons (CC) Version 4.0 licences
• Restrictive Licence Template (RLT)• BSD 3-Clause Software Licence
ANDS endorses AusGOAL
Wide support by Federal and State Governments
http://www.ausgoal.gov.au
Licensing and data
NOT FOR DATA
Slide is courtesy of Baden Appleyard – Director of AusGOAL
When CC licence not suitable
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 to apply a licence?• Ownership• IP policies• Collaborations: agree – before collecting the data
• Apply the marking (image) and/or statement• Make it visible on the document, repository record,
and/or attached to the data
How can data be shared if it is combined from multiple (health) sources?
Where does human data sit within the open access agenda?
What about selective sharing of data?
What about sharing data that can’t be de-identified?
healthtalkaustralia.org
Informed consent
Personal Genome Project http://www.personalgenomes.org/
Some useful articles about informed consent for open genomic datahttp://arep.med.harvard.edu/pdf/Lunshof08.pdfhttp://lsspjournal.springeropen.com/articles/10.1186/s40504-014-0020-9http://genomesunzipped.org/2010/10/why-public-genomics-is-not-a-purely-personal-decision.php#more-1186
Open consent for genomic data
Take away
Informed consent
Researchers have control• Licences• Mediated access
Published/shared is NOT the same as open
http://www.ands.org.au/working-with-data/enabling-data-reuse/medical-and-health
Senior Research Data [email protected]
Kate LeMay
With the exception of logos, third party images or where otherwise indicated, this work is licensed under the Creative Commons Australia Attribution 3.0 Licence.
ANDS is supported by the Australian Government through the National Collaborative Research Infrastructure Strategy Program. Monash University leads the partnership with the Australian National University and CSIRO.
