status: Recognised & Endorsed

Chair (s): Kristal Spreadborough, Aleksandra Michalewicz, Nichola Burton, Steven McEachern, Romain DAVID, Dharma Akmon, Kristan Kang, Sarah Davidson, Frankie Stevens

Group Email: [group_email]

Secretariat Liaison: Stefanie Kethers

Sensitive data is increasingly used for research purposes. However, there are a number of barriers which need to be overcome before sensitive data can be fully operationalized in the research context. Chief among these is that not all sensitive data is alike, with significant disciplinary variation in how sensitive data is defined, linked, managed, stored, and reused. Additionally, common approaches to data optimization are not always appropriate for sensitive data, such as the relationship between the FAIR and CARE principles for data management. Nonetheless, sensitive data has significant potential to be utilized in the conduct of novel and impactful research. Therefore, it is essential that a set of community standards and best practices be developed to optimize sensitive data for research.  

We propose developing a shared understanding of sensitive data assets by running a BoF session at RDA VP16. The aim of this BoF is to share experiences working with sensitive data in a research context, identify the key challenges in this area, and to find others who may be facing similar challenges. If there is sufficient community interest, we aim to create a Working Group or Interest Group on this topic. We envisage this group as part of a global Community of Practice that is focused on the following objectives: 

  • Developing a clear understanding of different levels of sensitivity of the data for designing governance frameworks to manage sensitive data.  

  • Creating adaptable protocols for researchers to collect, analyse, store, share and re-use data with different levels of sensitivity.  

  • Produce guidelines for balancing F.A.I.R. principles with sensitive data management principles (e.g. C.A.R.E. principles) 

  • Formulating strategies for overcoming barriers to utilizing, sharing and reusing sensitive data for deriving maximum knowledge out of sensitive data assets  

  • Developing guidelines for ethical sharing, use and re-use of sensitive data assets 

  • Exploring consent models governing the primary and secondary uses of sensitive data 

Please see our Zenodo community titled “RDA Sensitive Data Interest Group” and our Zotero library called “RDA Sensitive Data ig” for resources shared/created by the IG.

If you would like to contirbute resources to the Zotero Library you will need to join the group. To do this, follow these steps:

  • Create an account or log in here
  • Click on "groups" from the top banner.
  • Click "search for groups"
  • Type "RDA Sensitive Data ig" in the search box and hit enter.
  • Click the group title, then select "Join" from the bottom right hand side.
  • A group admin will approve your request, then you will be able to enter items into the library.

Join the Slack Channel here "RDA Sensitive Data IG".

A history of the Sensitive Data IG can be found on our Wiki page here.

Present and Past IG Leadership

Present Co-Chairs:

Kristal Spreadborough - IG inception to current

Priyanka Pillai - IG inception to current

Aleksandra Michalewicz - IG inception to current

Nichola Burton - IG inception to current

Steven McEachern - 2/12/2020 to current

Romain DAVID - 2/12/2020 to current

Dharma Akmon - 1/2/2021 to current

Kristan Kang - 3/7/2021 to current

Sarah Davidson - 6/5/2021 to current

Frankie Stevens - 25/1/2021 - current

Past Co-Chairs:

Rita Rb-Silva - 23/3/2021 to 27/9/2021

Keith Russell - IG inception to 26/3/2021



Community Feedback - building a glossary of definitions related to sensitive data

by Kristal Spreadborough

Dear RDA community, The RDA Sensitive Data Interest Group is building a glossary of definitions related to sensitive data. We are interested in finding out how you use words related to sensitive data, and in building a common set of terms for us to use as a community.
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RDA 20th Plenary - Notification of Acceptance

by Secretariat Group Account

Dear Chairs of the Sensitive Data Interest Group, Your RDA 20th Plenary (P20) session application titled Sensitive data contexts and disciplines: A look at different approaches has been approved. Please consider this your official notification of acceptance. * Draft programme to be published on Friday, 16th December 2022 * Any requests for changes must be made by Friday, 13th January 2023 * The programme will be deemed final by Thursday, 19th January 2023 * Event platforms to be used - Whova and Zoom (details will be provided)
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Invitation to participate in 'A Decade of Data: 10 Years of the RDA' events and activities

by Connie Clare

Good day, The RDA Secretariat would like to invite the Sensitive Data Interest Group to participate in ‘A Decade of Data’: Celebrating 10 Years of the Research Data Alliance’. 10 months to celebrate 10 years of the RDA
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Sensitive Data IG RDA20 session proposal

by Kristal Spreadborough

Dear RDA Sensitive Data Interest Group community, I hope you are all well.
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October Community Meeting

by Aleksandra Michalewicz

Dear Sensitive Data Interest Group Community,    We hope you are all well!   This is a reminder that our October Community meeting is happening this week on October 26 at 20:00 UTC.   This month our speaker is A/Prof Steven McEachern, Director of the Australian Data Archive, who will talk to us about work in Australia around the management and sharing of vocabularies. We will continue our explorations of international sensitive data vocabularies, and we will discuss our session submission for RDA 20th Plenary.
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July Community Meeting Canceled

by Kristal Spreadborough

  Dear Sensitive Data IG community, Please note that our July Community meeting has been canceled. We look forward to seeing you next month! For the recording and notes from our previous Community Meetings, please see here.
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