The Data Access, Storage, Sharing and Linking (DASSL) model, published in 2016, paved the way forward for Ireland to modernise its environment to better support research based around national/regional health and related datasets. It was diligently constructed to address a major impediment to health research in Ireland: that researchers face considerable barriers in accessing, sharing and linking national datasets that reside in silos. One of the key recommendations from the DASSL model was the development of a national infrastructure that will provide a consistent mechanism for data access, sharing, linking in a secure and trusted manner. This project is the first step in achieving this important goal, working with national and international partners and guided by a diverse stakeholder group.
Firstly, the project will examine whether the DASSL model remains international best practice, as technologies and similar infrastructures abroad evolves quickly. The project will then focus on the technical implementation of the infrastructure. This will involve setting up a network of computer systems that represent the key elements from the DASSL model including data controllers, trusted third parties for indexing and linking services, safe haven for data analysis, etc. Research will be done to source and adapt a software solution that will be used to support a typical DASSL workflow, i.e. to enable data requests, indexing, linking, provisioning. Throughout this process, the research team will guide development efforts and test the platform by conducting mock research projects that involves requesting and linking multiple datasets on the proof-of-concept infrastructure. In order to minimise the risk of compromising identifiable data on a developmental platform, the research team will employ cutting edge techniques to generate synthetic data that mimics the characteristics of real data. Finally, the project will provide concrete plans of how it can be scaled up into a proper national system.
