What is sensitive data? Can sensitive data be shared? 23 (research data) Things - Thing 10 Sharing Sensitive Data Top five tips for sharing sensitive data

1. Force 11 Scholarly Communications Institute
Summer School
31 July – 4 August 2017
University of California, San Diego
Data in the Scholarly Communications
Lifecycle
Natasha Simons
Senior Research Data Specialist

2. Sensitive data – session outline
• What is sensitive data?
• Can it be shared?
• Exercise: Thing 10 – sharing sensitive data
• Class discussion: what issues need to be
considered before sharing the data?
• Example: ALSWH
• Resources: ANDS Guides + Decision tree +
webinars

3. What are sensitive data?
Sensitive data are data that can be used to identify
an individual, species, object, or location that
introduces a risk of discrimination, harm, or
unwanted attention. Major, familiar categories of
sensitive data are:
• human medical/health and personal data,
including information about secret or sacred
practices
• ecological data that may place vulnerable species
at risk.

4. Example: Wollemi Pine

5. • Data that comes from or is about people, is often paired with
personal information, or information that is inextricably linked to a
person/s (e.g., in-depth interviews, genetic data…)
• Under law, this is personal data: ‘information or an opinion ..,
whether true or not, and whether recorded in a material form or
not, about an individual whose identity is apparent, or can
reasonably be ascertained .. ’ (Privacy Act 1988, s6)
• And often sensitive data: personal information (i.e., identifiable)
accompanied by information about non-disclosure and consent.
What are sensitive data? Legally

6. What are sensitive data? Ethically
In research institutions, we have both legal AND ethical
obligations (i.e. human research must be approved by a Human
Research Ethics Committee).
So we broaden our definition to be:
Sensitive data – ‘any data that contain information that can be
used to identify an individual and introduce a risk of
discrimination, harm, or unwanted attention.’
(definition from:
http://www.ands.org.au/datamanagement/sensitivedata.html)

7. Can sensitive data be shared?
In many cases, yes!
• Publishing your data, or just a description of your data,
means that others can discover it, reuse it and cite it.
• Sensitive data that has been confidentialised can be openly
published and shared: see an example of a de-identified
dataset with medical information in Research Data
Australia.
• You can publish a description (i.e. metadata) of your data
without making the data itself openly accessible, which
enables you to place conditions around access to the data.
• YouTube: A risky business... or is it? The benefits of
publishing sensitive data in a snapshot (1 minute).

8. Incentives for researchers
Aside from the benefits of publishing and sharing any data
(e.g. citations, new collaborations, boosting profile, funding
opportunities), sharing and re-using health data (as an
example of sensitive data) is:
• Efficient – health data from people is some of the most
expensive and time-consuming data to collect
• Ethical – participants of health studies can be
oversampled if they have a rare conditions or are from a
small community. Sharing data reduces participant
fatigue.

9. Exercise: Thing 10: Sharing sensitive data
Sharing sensitive data requires careful consideration,
but it can be done. Find out how.
Getting started: If it’s so sensitive - how can it
possibly be shared and published?!
Learn more: Who are the “data gatekeepers”?
Challenge me: Make me anonymous
http://www.ands.org.au/partners-and-
communities/23-research-data-things/all23/thing-10
Time: 15 minutes

10. Class discussion
What issues need to be considered before sharing
sensitive data?

11. Example: ALSWH
Australian Longitudinal Study on Women’s Health
http://www.ands.org.au/working-with-data/publishing-and-reusing-
data/data-reuse/benefiting-womens-health

12. Top 5 tips
1. Be a scout: Plan ahead with ethics applications and consent
forms if possible (seek examples from colleagues and ANDS Guide).
For existing data that did not seek consent, consult HREC.
1. Consider options for data ‘de-sensitising’.
1. Be as open as you can whilst being responsible.
2. Consider conditional access to data themselves? Or a public and
restricted version of data.
3. At least, or at first, publish metadata.

13. Resources - ANDS Guide
ANDS Guide - Publishing and sharing sensitive data outlines
best practice for the publication and sharing of sensitive
research data in the Australian context. Includes:
• confidentialising your human and sensitive ecological data
• what's legal
• what to include in a consent form requesting data publication and sharing
• sharing sensitive data that you did not collect
• making data discoverable: metadata
• conditional access to data: what is it; how do I do it?
• licensing your data
• depositing your data
• a comprehensive guide on most things you need to know about publishing
sensitive data.

14. Resources – ANDS Guide
ANDS' De-identification Guide gives a legal definition of de-
identification and collates a selection of Australian and
international practical guidelines and resources on how to de-
identify datasets. It is intended for those who own a dataset
and want to de-identify it for the purpose of sharing or
publishing the data. The Guide covers:
• Definitions
• `Identifiable, re-identifiable, non-identifiable’ data
• Australian practical guidance for de-identification
• International practical guidance for de-identification
• Qualitative data
• Audio-visual data
• Management of identifiable data
• Not all data for sharing has to be de-identified!

15. Resources – ANDS decision tree

16. 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.
Natasha Simons
natasha.simons@ands.org.au
Tw: @n_simons
ORCID: https://orcid.org/0000-0003-0635-1998