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 Specialistkate.lemay@ands.org.au

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.