Presentation from Kate LeMay, ANDS, to the Menzies HIQ Symposium: The Future of Data Sharing in a Changing Landscape on 30 May 2017

1. Kate LeMay
Menzies HIQ Symposium: The Future of
Data Sharing in a Changing Landscape
Senior Research Data Specialist
30 May 2017

2. The Australian National Data Service (ANDS) makes
Australia’s research data assets more valuable for
researchers, research institutions and the nation.

4. The data sharing landscape

6. International Funders
Many are mandating data sharing

7. Australian Funders
Discovery, linkage Data Management Plan
NHMRC Statement on Data Sharing (2016)
Human Research Ethics Application (HREA)
National Statement on Ethical Conduct in Human Research
Code for Responsible Conduct of Research

9. “NHMRC-funded researchers are encouraged to consider from the earliest stages of
research planning how their research data will be obtained, managed, curated, stored
and disseminated into an appropriate, publicly accessible database.”
NHMRC Statement on Data Sharing (2016)

10. Journals
BMJ 2015;350:h2373
http://journals.plos.org/plosone/s/data-availability
http://www.icmje.org/news-and-editorials/M15-2928-PAP.pdf
http://www.nejm.org/doi/full/10.1056/NEJMe1601087#t=article

11. Data sharing is on the horizon

12. Legal: Privacy legislation

13. Legal: Privacy legislation
Privacy Act 1988
Personal
information
Sensitive
information
Health
information
Sensitive data
“data that can be used to
identify an individual,
species, object, process or
location that introduces a
risk of discrimination,
harm or unwanted
attention.”
Guide to Publishing and Sharing Sensitive Data
http://www.ands.org.au/guides/sensitivedata

14. Queensland legislation
• Hospital and Health Boards Act 2011
• Public Health Act 2005
• Information Privacy Act 2009 (Qld)
• Private Health Facilities Act 1999
• Health Quality and Complaints Commission Act
2006 (Qld)
• Health Services Act 1991 (Qld)
• Information Standards 42 (general) & 42A (health)
Seek legal advice at your Institution!
http://www.alrc.gov.au/publications/2.%20Privacy%20Regulation%
20in%20Australia/state-and-territory-regulation-privacy

15. Ethics and informed consent

16. Ethics
• Informed consent
• Avoid harm (=remove/minimise sensitivity)
• De-identifying data (see ANDS Guide)
• Conditions around access to data (mediated
access)
• Ethics committee approval
• See also ANDS recent webinar

17. Informed consent
1. Avoid precluding data de-identification,
publication and sharing
2. State possibility of future data publication
3. State conditions of access
4. Document consent with collected data to inform
subsequent users
Example wording available in ANDS Guide to
Publishing and Sharing Sensitive Data

18. Something to think about later
Open consent for genomic data!
Personal Genome Project
http://www.personalgenomes.org/
Some useful articles about informed consent for open genomic data
http://arep.med.harvard.edu/pdf/Lunshof08.pdf
http://lsspjournal.springeropen.com/articles/10.1186/s40504-014-0020-9
http://genomesunzipped.org/2010/10/why-public-genomics-is-not-a-
purely-personal-decision.php#more-1186

19. Licensing data

20. Licences
• Without a licence it’s unclear how data can be reused
• Tells how data can be (re)used and attributed
• All Australian data intended for reuse should have a
licence
• Gives the owner control and credit

21. Creative commons

22. Licensing and data
NOT FOR DATA



23. Data citation

24. DOIs for data

26. Resources for medical and health data
ands.org.au/working-with-data/sensitive-data
ands.org.au/medical
Publishing and sharing
sensitive data Guide
Data sharing considerations for Human
Research Ethics Committees Guide
De-identification Guide

27. Senior Research Data Specialist
kate.lemay@ands.org.au
Twitter @katelemayands
Kate LeMay
With the exception of third party images or where otherwise indicated, this work
is licensed under the Creative Commons 4.0 International Attribution 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.