Presentation given by Kate LeMay at the 'Sharing Health-y Data Workshop: Challenges and Solutions' event co-hosted by ANDS and HISA. Held on Wednesday 16th March 2016 at the Translational Research Institute, Brisbane, Australia.

1. The guide to publishing and
sharing sensitive data
Kate LeMay
Senior Research Data Specialist, ANDS March 16 2016
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2. PLAN TO PUBLISH!
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3. ANDS GUIDE
Publishing and Sharing
sensitive data
Author Dr Sarah Olesen
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http://ands.org.au/guides/sensitivedata

4. KEY MESSAGES FROM THE GUIDE
• Plan to publish
• Sensitive data that has been confidentialised can be
shared.
• Advantages outweigh disadvantages of publishing your
sensitive data
• You have choices about publishing
• Metadata only
• Metadata plus mediated access
• Metadata plus open access
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6. WHAT DOES THE GUIDE COVER?
1. What are sensitive data?
2. I have sensitive data – now what?
3. Confidentialising data
4. Ethical considerations
5. Making data discoverable
6. Licensing
7. Your right to publish
8. Depositing your data 6

7. CONFIDENTIALISATION
Removing or altering data so that people or the subjects of
data cannot be identified
• De-identifying the data
• Continuing to manage the risk of identification even after the
dataset has been de-identified
Confidentialised data is no longer
sensitive and can be shared
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8. 1. Direct identifiers
• Remove ALL
• Examples (full list in the Guide)
1. Name
2. Address
3. Phone number
4. Medical device identifiers
2. Indirect identifiers
• 2 or more present may identify participants (triangulation)
• Remove or modify
• Examples (full list in the Guide)
1. Sex
2. Place of birth
3. Household and family composition 8
CONFIDENTIALISATION

9. Removing versus modifying?
• Remove direct identifiers
• Remove OR modify indirect identifiers
Modifying
• If removal de-values the dataset
• Combine responses into categories
• Top and bottom coding
• Rounding times, dates, measurements
• Cell suppression
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CONFIDENTIALISATION

10. What is a data repository?
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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.
DEPOSITING YOUR DATA

11. What kinds of data repositories are there?
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DEPOSITING YOUR DATA
(search for repositories)

12. Are repositories for open data only?
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Yes and no….because it depends on the purpose/scope
Repositories can support data that is:
1. Open access only
2. Mediated access only
3. Closed/private only
Most data repositories are a
combination of 1 & 2
DEPOSITING YOUR DATA

13. Consider
• Institution/employer/funder/publisher mandates
or recommends a repository
• Discipline conventions
• Publish metadata and data in same place
• Metadata required
• Data format
• Costs (some free, some $$)
• Conditional access
• Data citation by allocating DOI 13
DEPOSITING YOUR DATA

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15. ANDS GUIDE
Publishing and Sharing
sensitive data
Author Dr Sarah Olesen
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http://ands.org.au/guides/sensitivedata
PLAN TO PUBLISH!

16. ands.org.au/23-things
It’s only week 2 – not too late to start!
JOIN our virtual group: 23 Things Health Data Community Group (4 weekly)
Julie Toohey julie.toohey@griffith.edu
Kate LeMay kate.lemay@ands.org.au

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This work is licensed under a Creative Commons Attribution 3.0 Australia License
ANDS is supported by the Australian Government through the National Collaborative
Research Infrastructure Strategy (NCRIS).