Location: Hybrid (Zoom and INESC Lisboa Room 09)

Speaker: Zoran Milosevic

Abstract:

Obtaining informed consent in bioinformatics research is critical, but traditional paper forms hinder data use. This talk proposes a novel approach utilizing HL7 FHIR, a modern healthcare data exchange and interoperability standard, to support describing consent in a computable format. By leveraging a formal policy language, we can express complex consent terms concerning data access, sharing, and participant rights in a machine-readable format. This approach, based on consumer data sharing preferences, allows for automated consent enforcement and improved data quality for downstream analyses.

The presentation will delve into our FHIR-based computable consent method, demonstrated through a digital health use case focused on clinical trials.

We'll showcase how FHIR resources can support various consent elements, including data access permissions, sharing restrictions, participant rights, and obligations of providers and third parties. We’ will conclude with a discussion with audience about potential applications for BioData.pt research and explore how this method can contribute to ethical and efficient data management within the bioinformatics landscape.

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