Health-y Sharing of Human Data

By Yeo Pin Pin

Are you dealing with sensitive data? And what is sensitive data in the first place? Dr Sarah Olesen from the Australian National Data Service (ANDS) presented on this topic in her presentation “Health-y sharing of human data” at the Li Ka Shing Library during her visit to SMU on 30 September 2015.

Sensitive data is any data that contains personal information that can identify an individual and introduce a risk of discrimination, harm or unwanted attention. Sensitive data can be found in social surveys, medical records, interview transcripts and financial details. Increasingly, researchers have to meet requirements to share data, e.g. from funders, publishers like Public Library of Science (PLoS) where data for the paper needs to be shared. Many institutions are also establishing policies on data sharing for research collaboration.

In order to share data, researchers must obtain the consent of their subjects prior to data collection. They will need to plan ahead to decide the data to be collected, and consider how the data will be stored, accessed, and shared. Thereafter, the researchers will need to prepare the appropriate consent form and explain clearly to their subjects before they provide their consent. While it is possible to “desensitise” the data by modifying the data to protect the privacy of individuals, the researcher will need to get approval from their Institutional Review Board to do so.

With the appropriate consent, desensitising of data and institutional approval, even sensitive data can be shared with open access. There are other options for data sharing too, such as conditional or mediated access, where the requester would have to identify themselves and explain how they plan to re-use the dataset.

For more information, ANDS has general guides and resources at http://www.ands.org.au/guides/index.html and guides for publishing and sharing sensitive data at http://www.ands.org.au/guides/sensitivedata.html

Dr Sarah Olesen’s presentation is available in InK at http://ink.library.smu.edu.sg/lib_events/7

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