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
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
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
Rita Rb-Silva - 23/3/2021 to 27/9/2021
Keith Russell - IG inception to 26/3/2021