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As the providers of the CloudStor data storage and sharing service, which now has close to 60,000 registered users in the academic and research community, we have seen a groundswell in sensitive data related enquiries from Australian researchers over the past 12+ months.
These researchers are wanting to work collaboratively with sensitive data and are seeking a common sensitive data storage infrastructure for Australia, along with common policies and procedures for safely managing and sharing this data.
Collaboratively developing solutions and services to meet the unique needs of the research community has long been central to AARNet’s operational mission. With this approach in mind, AARNet convened a Birds of a Feather session, titled Sensitive Data – How do you do yours?, at the eResearch Australasia 2018 Conference in October to delve into and better understand issues and challenges related to researchers working with sensitive data.
In this session, AARNet facilitated an interactive online poll for conference delegates, debated with an expert panel representing the broad perspective of sensitive data (medical, cultural, species, etc), including representatives from the Australian Data Archive, the Australian Research Data Commons (ARDC), the Australian Bioinformatics Commons, and the Terrestrial Ecosystem Research Network.
The session was well attended and generated much discussion, with one key outcome being to continue the conversation through the formation of a Sensitive Data Community of Practice (CoP), facilitated by the ARDC.
The first CoP meeting was held online on 12 December 2018 and was attended by over 40 participants! We hope this forum will help guide national infrastructure providers, such as AARNet, and national infrastructure funders, such as ARDC, in the potential future provision of appropriate sensitive data services.
Following the successes of the eResearch Australasia Conference session, we are pleased to announce that the program committee for the eResearch New Zealand Conference, to be held in February 2019 in Auckland, has approved a similar session, which will be hosted by AARNet and will delve further into sensitive data issues and challenges.
AARNet is seeking to co-design and co-develop solutions to the sensitive data challenges with its members and customers, which include Australia’s universities, medical research institutes, public funded research agencies and healthcare facilities providing teaching, training and supporting research.
As the owner and operator of national infrastructure – the AARNet network is the interconnector between many of the facilities within the sector – AARNet has the ability to address national issues and is uniquely placed to bring together all the relevant stakeholders.
Sensitive data can be thought of as data relating to people, animal or plant species, data generated or used under a restrictive commercial research funding agreement, and data likely to have significant negative public and/or personal impact if released. Major, familiar categories of sensitive data are: data concerning human participants, data relating to species of plants or animals and commercially sensitive data. Most research institutions will have some form of sensitive data, yet there is no commonly adopted process, policy or storage architecture employed across institutions in Australia when it comes to sensitive data.
The legal framework around sensitive data in is complex and differs within and between nations. Different pieces of legislation regulate the collection, use, disclosure and handling of sensitive data, and there are also many ethical considerations around the management and sharing of sensitive data, in addition to funding body compliance elements on sensitive data. Together, these present a confusing landscape for researchers wanting to work collaboratively with sensitive data, keep it safe, make it FAIR, and perhaps enable its re-usability.
If you’d like to participate in the sensitive data discussion, and help drive national approaches to this, please come along to the eResearch NZ conference – 18-20 February 2019 in Auckland!
For more information, please contact AARNet’s eResearch team, or find out more about AARNet’s CloudStor data storage and sharing service for researchers.