status: Recognised & Endorsed
Chair (s): Kristal Spreadborough, Aleksandra Michalewicz, Nichola Burton, Steven McEachern, Romain DAVID, Dharma Akmon, Kristan Kang, Sarah Davidson, Frankie Stevens, Kylie Black
Group Email: [group_email]
Secretariat Liaison: [field_secretariat_liaison]
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:
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Developing a clear understanding of different levels of sensitivity of the data for designing governance frameworks to manage sensitive data.
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Creating adaptable protocols for researchers to collect, analyse, store, share and re-use data with different levels of sensitivity.
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Produce guidelines for balancing F.A.I.R. principles with sensitive data management principles (e.g. C.A.R.E. principles)
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Formulating strategies for overcoming barriers to utilizing, sharing and reusing sensitive data for deriving maximum knowledge out of sensitive data assets
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Developing guidelines for ethical sharing, use and re-use of sensitive data assets
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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
Past Co-Chairs:
Rita Rb-Silva - 23/3/2021 to 27/9/2021
Keith Russell - IG inception to 26/3/2021
Posts
McGill Data Anonymization Workshop Series recordings & presentations are now available
by Biru Zhou
Dear colleagues, The McGill Data Anonymization Workshop Series, organized by the McGill Digital Research Services Hub (DRS), was a great success with 1180+ attendees from all over the world participating to upskill their knowledge in data anonymization/de-identification in both quantitaive and qualitative data.0 | Add new comment
RDA Sensitive Data Interest Group: September Community Meeting: Solutions and Suggestions
Dear RDA Community, Please join us for our September Community Meeting, to be held this week! We will be focusing on Solutions and Suggestions, and preparing for the forthcoming Plenary.1 | Add new comment
Upcoming McGill Data Anonymization Workshop Series - Oct 3, 4, 17, & 18
by Biru Zhou
**** Appologies for cross-posting Dear Sensitive Data IG, You are all invited to join our upcoming McGill Data Anonymization Workshop Series for both qualitative and quantitative research data in Ocotber. All workshops are online and free to attend! Space is limited, Register today! Sincerely, Biru Zhou, Ph.D. Senior Advisor, Research Data Management Digital Research Services0 | Add new comment
July meeting summary and call for Plenary speakers
Hello Sensitive Data IG, Thanks to those who attended the July community meeting, it was a fantastic discussion. The meeting attendees agreed that for the moment we will not be recording meetings, so that attendees can talk freely about how their organizations handle sensitive data. After each meeting we will share a summary of the discussion that does not link comments to particular attendees or organizations. You can find the most recent summary attached.2 | Add new comment
McGill Data Anonymization Workshop Series 2023
by Biru Zhou
*** la version française suit *** McGill Data Anonymization Workshop Series:0 | Add new comment
RE: [EXT] [sensitivedata] RDA P21 @ IDW 2023 - Notification of Conditional Acceptance
Hello, On behalf of the Sensitive Data Interest Group, many thanks for sharing with us this conditional acceptance of our session proposal. With regards to the additional details required, that of the presenters, these will be: - Nichola Burton - Aleks Michalewicz Please note that we are still working to confirm other speakers. If there is any further information that we can provide, please let us know. Thank you and we look forward to the Plenary, Aleks -- Dr Aleksandra Michalewicz Academic Specialist - Research Data0 | Add new comment
RDA P21 @ IDW 2023 - Notification of Conditional Acceptance
Dear Chairs of the Sensitive Data IG, Your RDA P21 session application titled Sensitive Data classifications and protocols across regions has been conditionally approved, subject to you incorporating the following changes provided in the feedback below: The agenda should include details of the presenters. Please indicate at least one or two names. A revised version of your application should highlight the suggested modifications and be sent to ***@***.***-foundation.org by close of business Thursday, 27th July.0 | Add new comment
Re: [sensitivedata] Re: [sensitivedata] July Sensitive Data Community Meeting - classification...
Sorry all - Zoom trouble, you can join us at https://ardc-edu-au.zoom.us/j/83166497162?pwd=YnNHRjQ5M1IvN1c2RWM4SjJXMm... On Wed, 12 Jul 2023 at 22:10, oappleton via Sensitive Data Interest Group < ***@***.***-groups.org> wrote: > Zoom says it is waiting for someoen to start it.0 | Add new comment
Re: [sensitivedata] July Sensitive Data Community Meeting - classification...
by Biru Zhou
Dear all, I have difficulty joining the community meeting. I have been waiting for the host to start the meeting for a few mins now. Is this normal? Sincerely, Biru Biru Zhou, Ph.D. Senior Advisor, Research Data Management Strategic Initiatives | Office of the Vice-Principal (Research and Innovation) Digital Research Services Hub | www.mcgill.ca/drs McGill University ********************************************************************************3 | Add new comment
July Sensitive Data Community Meeting - classification frameworks
Dear RDA Community,2 | Add new comment