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
Join the Slack Channel here "RDA Sensitive Data IG".
Brief IG history
November, 2021 - Session and poster submission accepted for RDA18.
October, 2021 - Members of the IG presented at the eResearch Australasia Conference (12 October) on "Making the Most of the Research Data Alliance".
September, 2021 - Met for our first open Community Meeting.
April, 2021 - Met for the first time as an IG at RDA17.
February 2021 - submitted charder for first review by Tab and Comunity.
December, 2020 - Initial group of interested co-chairs for the first time to discuss the potential IG and begin drafting the Charter.
November, 2020 - Met for the first time as a BoF at RDA16.
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