Introduction

In 2019, the HRB launched the Data Access, Storage, Sharing and Linkage (DASSL) Proof of Concept Award to support the development of a technical infrastructure as proposed in the original 2016 DASSL report.

Following a competitive process, the HRB awarded funding to the Irish Centre for High-End Computing (ICHEC) to develop, support and to provide recommendations for the roll-out of a DASSL-type infrastructure in Ireland. The project is targeted to further go beyond the technical infrastructure for the PoC and to consider fully the implementation and sustainability of such a model on a national scale.

Objectives of the Award

The project includes four key objectives:

1. To confirm that the DASSL model remains in line with international best practice and best practice for Ireland, and propose any adjustments as appropriate.
2. To develop test infrastructure for Irish health research that meets international standards of controlled data access, storage, sharing and linkage, and provides for an analytic platform.
3. To deliver a detailed report of the overall process of delivery and alternative options considered, outlining how the technical infrastructure could be scaled-up to national infrastructure and implemented. 
4. To engage with a wide range of stakeholders to ensure user acceptance and to promote and leverage support for national infrastructure for secure access and efficient linkage of health datasets.

DASSL Final Outputs

The DASSL project was completed by the ICHEC team in August 2022 and a final report entitled “Proof-of-Concept: Technical Prototype for Data Access, Storage, Sharing and Linkage (DASSL) to support research and innovation in Ireland” was produced in July 2023 that outlines how the DASSL model could be rolled out on a national level, with regards to technical specifications.

The DASSL final report highlights key findings of the project and has provided critical recommendations specifically for technical implementation, data providers and for those involved in the legislation process. Some of the key recommendations include:

• Using a two-model approach involving centralised and de-centralised models for establishing a Research Data Trust.
• Projected costings for a national DASSL service including personnel, infrastructure, and resources.
• Cloud based solution for flexibility and scalability for developing a DASSL model.
• Critical national datasets need to collect personal identifiers to support record linkage.
• Legislative framework required for more efficient, centralised storage of key health datasets.

The final report also includes a separate section on five case studies using synthetic data that provided key insights into different datasets and further demonstrated many of the benefits, risks, and requirements of a national DASSL solution and the national health and related datasets in Ireland.

Eolas magazine DASSL: A technical infrastructure to support access, sharing, storage and linkage of health data

University of Galway: The Future of Secure Linked Data Analysis to Improve Health Services in Ireland

Irish Tech News: Health data sharing to be improved with new prototype infrastructure developed by ICHEC

DASSL report launch: Enabling a trusted health data research envronment