Practices and challenges in clinical data sharing

03/17/2023

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by   Fida K. Dankar, et al.

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The debate on data access and privacy is an ongoing one. It is kept alive by the never-ending changes/upgrades in (i) the shape of the data collected (in terms of size, diversity, sensitivity and quality), (ii) the laws governing data sharing, (iii) the amount of free public data available on individuals (social media, blogs, population-based databases, etc.), as well as (iv) the available privacy enhancing technologies. This paper identifies current directions, challenges and best practices in constructing a clinical data-sharing framework for research purposes. Specifically, we create a taxonomy for the framework, identify the design choices available within each taxon, and demonstrate thew choices using current legal frameworks. The purpose is to devise best practices for the implementation of an effective, safe and transparent research access framework.