Health data sharing to be improved with new prototype infrastructure developed by ICHEC

The Irish Centre for High-End Computing (ICHEC) is developing a proof-of-concept (PoC) technical infrastructure to facilitate the linking of health data.

Funded by the HRB, DASSL (data access, storage, sharing, linkage) will facilitate the provision of health data in a safe and trusted manner, with patient anonymity secured at all times. Similar national Health Data Platforms have been developed internationally, most notably in the UK, Australia, Canada, and Finland.

Commenting on the DASSL project, Dr Simon Wong who is leading the development project at ICHEC, said “Across the Irish health services, barriers to data sharing and linking health datasets have included siloed datasets, inconsistent application of existing legislation, privacy concerns, and different interpretations over data protection.

“Added to these barriers, minimal use of unique identifiers and the lack of a formal and secure infrastructure to integrate, link and support remote access to data for secondary purposes, including for research, has led to valuable projects being inordinately delayed or in some cases abandoned.

Providing a safe and secure single point of access for researchers to linked health and related data as in DASSL improves the efficiency of research outputs while also capturing a more comprehensive overview of the population with longitudinal information which is often more accurate compared to subjectively reported information.

“This also reduces demands on research participants and ensures that research data is being held securely, “ he said.

Dr Orna Fennelly, e-health researcher at ICHEC is creating a prototype technical infrastructure for DASSL which will be tested using synthetic health data.

“The overall objective of the project is to improve healthcare and public health and wellbeing,” she said.

“Our work is informed by key stakeholders and this will inform the development, technical infrastructure requirements, operation, and governance of Ireland’s future Health Information Systems.”

The DASSL PoC, commissioned by the HRB and delivered by ICHEC will report its findings at a critical time to inform actions to shape a fit-for-purpose Irish health information ecosystem, with a clear policy intent to optimise the use of health and social care data for secondary purposes, and informing the associated governance, legislation and investments required.

The ultimate aim is to enable a better, evidence-informed health system and stimulate research and innovation to improve healthcare outcomes and the wellbeing of the population.