Disclosure control issues in complex medical data

Green, Elizabeth; Ritchie, Felix; Smith, Jim; Western, David; White, Paul

Abstract

The covid19 pandemic assisted the acceleration of routine access to medical records for research. In the UK platforms including OpenSafely and NHSDigital, alongside emerging hospital trust based Trusted Research Environments (TREs), demonstrate the utility and need for medical researchers to access and use microdata safely and securely. Whilst many employ traditional principles-based SDC standards to statistical outputs, complexity arises when considering complex medical data which is required to remain highly detailed; for example genome, medical imaging, or fMRI data where the output often includes reference to individual observations. Current imaging libraries and databases have demonstrated awareness and need for metadata standards, but consideration of both input and output protection is less clear. With the need to retain observations with high level of detail this presentation discusses present considerations for potential SDC solutions and also invites conversation from the wider community.

• Presentation Conference Type: Conference Paper (unpublished)
• Conference Name: UNECE/Eurostat Expert Group on Statisticial Data Confidentiality
• Start Date: Sep 26, 2023
• End Date: Sep 28, 2023
• Deposit Date: Oct 8, 2023
• Publicly Available Date: Oct 10, 2023
• Keywords: medical data, confidentiality, privacy
• Public URL: https://uwe-repository.worktribe.com/output/11165720
• Publisher URL: https://unece.org/sites/default/files/2023-08/SDC2023_S6_5_UWE_Green_D.pdf
• Additional Information: The presentation associated with this can be found at the conference website https://unece.org/statistics/events/SDC2023