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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

Getting startedLearn MoreChallenge me


Getting started

Thing 10: Sharing sensitive data

Major, familiar, categories of sensitive data are human data (eg health and personal data, secret or sacred practices); or ecological data (may place vulnerable species at risk).

Given the nature of this type of data, you might expect that it can’t be shared and reused. But in many cases, it can be.

1. Explore one of these examples of published sensitive data:

  • Pregnancy and Lifestyle dataset shows how sensitive, de-identified data can be safely and openly shared. Click on “Go to Data Provider” to see the actual data.
  • This one page story tells how sensitive data from the Australian Longitudinal Study of Women’s Health data has been successfully published for almost 20 years.

2. How do you share and publish sensitive data?

  • Scan the ANDS sensitive data webpage.
  • Open the Publishing and sharing sensitive data poster below to get an overview of issues and solutions.

Sensitive data tree

  • If you have time: follow a couple of the links on the sensitive data page which are of particular interest to you.

Consider:

Imagine you are either a researcher or a participant in a health data survey:

  • Participant: what questions might you first ask the researcher about intended sharing and reuse of the survey data?
  • Researcher: What responses would you need to prepare to anticipate participants' questions about publishing “their data for all the world to see”?

Do you have a question?  Want to share a resource?


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Learn more

Thing 10: Sharing sensitive data

How we manage sensitive data through its lifecycle and who has a role in ensuring sensitive data is appropriately managed and shared are critical issues in ensuring sensitive data can be shared.

Open Guidelines for the Ethical Use of Digital Data in Human Research (produced by Melbourne University and the Carlton Connect Initiative).

  • Start by reading the introduction
  • Take a closer look Data governance and custodianship on pp15-16
  • Consider your responses to the questions on p16
  • If you have time: scan through the rest of the comprehensive document.

Consider: What are your thoughts on the role of data gatekeepers, especially for sensitive data? What skills and knowledge do we need to protect sensitive data?

Do you have a question?  Want to share a resource?


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Challenge me

Thing 10: Sharing sensitive data

Anonymisation is a process that balances the risks of producing safe data with maintaining useful data. When anonymisation is done well the risk of disclosing information referring to individuals should be negligible.

  1. Consider the different techniques required to de-identify quantitative and qualitative data. The UK data service has information on anonymisation of both.
  2. Explore some tools and resources for practical advice on how to de-identify data.

Consider: What are some tools or resources you have come across that you would recommend that could help a researcher de-identify or anonymise their data?

Do you have a question?  Want to share a resource?


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in 23 (research data) Things