This document summarizes a presentation by Kate LeMay from the Australian National Data Service (ANDS) about sharing health and medical research data. It discusses ANDS' outreach to the health research community through workshops. Key points covered include definitions of research materials and outputs; funder requirements and guidelines for data sharing; legal and ethical considerations around sensitive data; options for de-identifying, licensing, and publishing data; and resources available from ANDS to help researchers plan to publish and share their data outputs.

1. Kate LeMay
ANDS seminar: sharing data outputs from
health and medical research projects
Senior Research Data Specialist
10 May 2017

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

3. Some definitions
• Research Materials
• Research Outputs
• Data Outputs

4. ANDS and the health and medical research community
Health-y data workshops (2015/16)
(7 workshops, 500 professionals)
Funded projects CRC, MRI
NHMRC relationship
Health data community group (23 Things)
10 medical and heath research data Things
Health Libraries Australia
Medical editors
Health and medical data webinar series

5. ANDS messages to researchers
• Plan to publish
• There are choices for sensitive data
• Published is not the same as open

6. Why share Data Outputs?

7. Why share Data Outputs?
Data
sharing
Discoverable
and citable
Pubs with
data cited
more often
Collaborations
and
publications
Secure and
ongoing
storage in
repositories
Replicate
or extend
findings
Reduces
burden on
participants
Ethical
obligation
(clinical
trials)

8. The data sharing landscape
Productivity Commission
International funders
NHMRC
Journals

9. International funders
Many are
mandating
data sharing
FAIR – Findable
Accessible Interoperable
Reusable

10. Data sharing landscape
Funders
NHMRC Statement on Data Sharing
Human Research Ethics Application (HREA)
National Statement on Ethical Conduct in Human Research (consent to future use)
Discovery, linkage Data Management Plan

12. “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)

13. Journals
BMJ 2015;350:h2373
http://journals.plos.org/plosone/s/data-availability
http://www.icmje.org/news-and-editorials/M15-2928-PAP.pdf

14. Data sharing is on the horizon

15. So Researchers are encouraged to share Data
Outputs – now the question is how?

17. Legal: Privacy legislation

18. 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

19. Ethics and informed consent

20. 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

21. Licensing data
Creative commons

22. What does creative commons look like?

23. Data de-identification

24. Identifiable*
Re-identifiable*
Non-identifiable*
De-identification/
Anonymisation
removing identifying
information
(‘identifiers’) for
publishing, sharing or
reuse
Identifiers
removed from
main dataset and
replaced by a
code.
Code is stored
separately
(preferably
encrypted)
Identifiers
permanently
removed
Recombining the re-
identifiable data set
and the identifiers
OR
Linking different data
sets
No specific individual can be identified
Possible to re-identify an individual
Identity of an individual can be
reasonably ascertained
Data set can be created as non-identifiable
by never being labelled with identifiershttp://www.ands.org.au/working-with-
data/sensitive-data/de-identifying-data
* Terms from National Statement on
Ethical Conduct in Human Research
2007 (Updated May 2015)
Data de-identification

25. What about sharing data that can’t be
de-identified?
healthtalkaustralia.org
Informed consent /
mediated access

26. Where to publish data
Repositories
Mediated access

27. Depositing data outputs
What is a data repository?
A research data repository is a
managed environment capable of
storing and sharing (largely) digital
data. The data repository supports
the process of curating, preserving,
and sharing research data.

28. Choices about publishing data outputs
1. Metadata only
2. Metadata plus mediated access
3. Metadata plus open access
What is metadata?
Location
• Institutional repository
• Discipline specific repository
• General repository

32. ANDS Resources

33. Resources for medical and health data
ands.org.au/working-with-data/sensitive-data
ands.org.au/medical

35. ORCiD

36. ●A unique identifier for researchers
●A set of standard procedures for connecting
researchers to their affiliations and activities
●An international-scale open research effort
What is ORCiD

37. Some of the benefits
• Automatic update
• Less time reporting more time researching
• Accurate attribution
• Discoverability
• Reliable citation statistics
• Link in with funder systems
• Reporting of grants to research institute could be
automated
• Reporting of publications to funders could be
automated

38. Summary
• ANDS has been reaching out to the health and
medical research community
• ANDS resources for publishing and sharing
sensitive data
• Messages
• Plan to publish
• There are choices for sensitive data
• Published is not the same as open

39. What do people need to know further about
data management and sharing Data Outputs?
How will this affect the researchers NHMRC
funds and the work of NHMRC?

40. 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.