University of Twente Student Theses


Improving the Personal Health Train approach with Electronic Data Capture Systems

Zhu, Zhiyong (2022) Improving the Personal Health Train approach with Electronic Data Capture Systems.

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Abstract:The collecting of data is an essential component of clinical trials. Accuracy, timeliness, and consistency of data collection can significantly improve the quality of clinical trials and shorten the length of investigations. Electronic Data Collecting (EDC) is a remote electronic records management system for clinical trials that gathers clinical trial information remotely and directly from the trial center via the Internet, reducing time and improving the accuracy of the obtained data. The Personal Health Train (PHT) is a method to make a patient's data accessible to several organizations through a distributed database while maintaining patient privacy and data sovereignty. In the context of PHT, this project intends to provide a framework that enables distinct EDC systems to remotely access each other's data across international borders while maintaining data sovereignty. We evaluate this framework by analyzing metrics on how it adheres to the FAIR data principles, providing recommendations on the findings from this analysis. Then, we evaluate the framework in terms of GDPR for transnational data jurisdiction and discuss the legality of the entire system. Finally, we recommend a set of encryption techniques to enhance the security and anonymity of data flows.
Item Type:Essay (Bachelor)
Faculty:EEMCS: Electrical Engineering, Mathematics and Computer Science
Subject:54 computer science
Programme:Computer Science BSc (56964)
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