Orchestrating differential data access for translational research: a pilot implementation

Abstract

BackgroundTranslational researchers need robust IT solutions to access a range of data types, varying from public data sets to pseudonymised patient information with restricted access, provided on a case by case basis. The reason for this complication is that managing access policies to sensitive human data must consider issues of data confidentiality, identifiability, extent of consent, and data usage agreements. All these ethical, social and legal aspects must be incorporated into a differential management of restricted access to sensitive data.MethodsIn this paper we present a pilot system that uses several common open source software components in a novel combination to coordinate access to heterogeneous biomedical data repositories containing open data (open access) as well as sensitive data (restricted access) in the domain of biobanking and biosample research. Our approach is based on a digital identity federation and software to manage resource access entitlements.ResultsOpen source software components were assembled and configured in such a way that they allow for different ways of restricted access according to the protection needs of the data. We have tested the resulting pilot infrastructure and assessed its performance, feasibility and reproducibility.ConclusionsCommon open source software components are sufficient to allow for the creation of a secure system for differential access to sensitive data. The implementation of this system is exemplary for researchers facing similar requirements for restricted access data. Here we report experience and lessons learnt of our pilot implementation, which may be useful for similar use cases. Furthermore, we discuss possible extensions for more complex scenarios.

Between Access and Privacy: Challenges in Sharing Health Data

“…Notably it was found that all of the resident physicians (45 of 45) had done so, while only 57% (38 of 66) of nurses had engaged in this behavior. The notion of managing access control in a distributed setting was addressed by Brandizi et al 11 . They demonstrated a pilot system that integrated various open-source components, based on digital identity federation, that enables open and restricted access to data associated with biobanking and biosample research.…”

Data Integration for Future Medicine (DIFUTURE)

“…Interfaces will be developed for accessing and performing operations on data from within these containers. Access to our infrastructure will be secured using an authentication and authorization infrastructure based on identity federation approaches, such as Shibboleth [ 42 ].…”

A LINDDUN-Based framework for privacy threat analysis on identification and authentication processes

“…Throughout different scientific documents LINDDUN 1 is referenced as one applicable PTA methodology and/or is used to analyze concrete scenarios, e.g., in health systems [12,13]. LINDDUN is to the best of our knowledge the only promising PTA framework that is systematically and scientifically proven.…”