status: In Group Revisions

Chair (s): Kristal Spreadborough, Priyanka Pillai, Aleksandra Michalewicz, Nichola Burton, Steven McEachern, Romain DAVID, Dharma Akmon, Rita Rb-Silva

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 

Posts

18
March
2021

Community feedback invited on the Sensitive Data IG poster proposal for RDAP17

by Kristal Spreadborough

We warmly invite communty feedback on the  Sensitive Data IG poster proposal for RDAP17. The text is provided below and a word document is also attached to this post.  Please provide any feedback by Tuesday 12:00:00UTC. +++++++ SD poster proposal RDAP17 (20-22 April 2021)  
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18
March
2021

Community feedback invited on the Sensitive Data IG poster proposal for RDAP17

by Kristal Spreadborough

We warmly invite communty feedback on the  Sensitive Data IG poster proposal for RDAP17. The text is provided below and a word document is also attached to this post.  Please provide any feedback by Tuesday 12:00:00UTC. +++++++ SD poster proposal RDAP17 (20-22 April 2021)  
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01
March
2021

RDA Virtual Plenary 17 - Notification of Acceptance

by Secretariat Group Account

Dear Chairs of the Sensitive Data Interest Group, Congratulations! Your RDA Virtual Plenary 17 (VP17) session application titled Establishing a Sensitive Data Interest Group has been approved by the Technical Advisory Board (TAB). Please consider this your official notification of acceptance.
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29
January
2021

RDA VP17 Session proposal submission

by Alexandra Delipalta

Dear Sensitive Data Interest Group members,    Thank you for your session proposal for Virtual Plenary 17 titled ‘Establishing a Sensitive Data Interest Group’. A review of all submitted proposals is now underway by the RDA Technical Advisory Board, with notifications of acceptance planned to be sent by 26 February.    Please feel free to contact the RDA Secretariat at enquiries@rd-alliance.org with any questions or concerns you have regarding your submission. Thank you.    Regards, 
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