A shared understanding of Sensitive Data: an update on current progress and looking to future work.

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26 Feb 2022
Group(s) submitting the application: 
Meeting objectives: 

This will be the first meeting of the Sensitive Data IG since our formal endorsement in January 2022. Previously we have engaged in an iterative process of 1) scoping the interest and needs of the RDA community, 2) examining the specific challenges associated with working with sensitive data, and 3) discussing possible future directions of the IG based on 1 and 2. In Q1 and Q2 of 2022, we have focused our work specifically on defining the vocabularies used to discuss sensitive data. At P19, we will continue this discussion, share preliminary findings, and plan next steps for IG outputs. 


 At this meeting, attendees will:

  1. Hear from invited presenters about their experience of developing a shared understanding of Sensitive Data. 

  2. Engage in open discussion about the group's experiences of communicating about sensitive data.

  3. Hear about the progress of the Sensitive Data / Data Privacy Terms and Definitions survey

  4. Discuss the preliminary results of the survey

  5. Co-design the next steps for this piece of work and discuss direction of future work

The meeting will feature 30 minutes of invited presentations followed by 10 minute discussion with the presenters and community. The remainder of the meeting will be reserved for group discussion/used as a working meeting. 

We have one confirmed invited presenter for this meeting is Dr Susheel Varma, Director of Engineering, Health Data Research UK. Susheel will speak on the topic of shared understandings of sensitive data. We will confirm our second invited presenter over the next several months.

Meeting agenda: 

Collaborative meeting notes: https://docs.google.com/document/d/1kU77ZRifd-x83TlrmSv0qESQa3HaHcE8lWZj...


  1. 5 Minutes: Introduction and context setting

  2. 15 Minutes: Invited presentation from Susheel Varma

  3. 10 Minute: Discussion with presenters and community.

  4. 50  Minute: Group activities and review of the vocabularies work to date 

    1. 5 Minute Update on status of the survey data

    2. 10 minute Summary of current vocabulary work.

    3. 30 Minute Group activity on developing Sensitive Data Glossary

    4. 5 Minute discussion of next steps and outputs relating to this work 

  5. 5 minute wrap up.

Target Audience: 

The IG has strong engagement from Australian members. At RDA19, we aim to engage group members from the Americas, Europe, Africa, Asia and the Global South.  Co-chairs will continue to leverage connections with the following groups to diversify our membership:

  • Social Sciences Interest Group

  • Ethics and Social Aspects of Data Interest Group

  • Social Dynamics of Data Interoperability Interest Group

  • Indigenous data sovereignty Interest Group

  • Medical Community of Practice Interest Group

  • International Indigenous Data Sovereignty Interest Group


The IG is regularly running community meetings through 2022 and this will help to encourage international engagement. The content discussed at P19 will build on the discussions and work of the community meetings and as well as P18 - this continuity will help foster continuing interest in our membership. Specifically, we will invite members from the above regions and groups to contribute to the survey (both by completing this survey, and by inviting them to aid in interpreting the results), ask for input on a glossary of sensitive data terms, and invite an extended, globally focused, discussion of sensitive data terminology. 


Group chair serving as contact person: 
Brief introduction describing the activities and scope of the group: 

This will be the fourth Plenary meeting of the Sensitive Data Interest Group (and our first as an endorsed IG with RDA). The IG now has a regular membership which we have fostered through regular community meetings (starting at the end of 2021 and continuing into 2022) and through development of work packages. Previous meetings of the IG have focused on highlighting the diversity of sensitive data, identifying challenges faced by the community, and identifying resources for working with sensitive data. Presently, we are focusing our efforts on our first output - developing a shared understanding of the terminology used to discuss sensitive data (https://www.rd-alliance.org/group/sensitive-data-interest-group/post/ter...). This will be the focus of the group’s community meetings in Q1 and Q2 2022, and we will bring these discussions to P19 through our IG session. We welcome suggestions and feedback on the IG in general, proposed outputs specifically, and ideas for future outputs and activities. All are welcome, including newcomers to RDA and to the IG.

Short Group Status: 


Type of Meeting: 
Working meeting
Avoid conflict with the following group (1): 
Avoid conflict with the following group (2): 
Meeting presenters: 
Dr Susheel Varma, Director of Engineering, Health Data Research UK