The ICHEC project is testing a prototype of a national health information system to improve healthcare and health research in Ireland.
Scientists are working on a new national data-sharing infrastructure that will help Irish researchers access health-related data from a single source to speed up research and improve its quality.
Demand for infrastructure to support the safe and secure analysis of linked health datasets has shot up since the Covid-19 pandemic began. National health data platforms already exist in countries such as the UK, Australia, Canada and Finland, but Ireland is yet to put one in place.
Now, researchers at the Irish Centre for High-End Computing (ICHEC) are collaborating with the Royal College of Surgeons, the HSE and Trinity College Dublin to develop a ‘proof-of-concept’ technical infrastructure that will allow for such data collaboration for scientists in Ireland.
Known as DASSL, an abbreviation of ‘data access, storage, sharing and linkage’, the project is funded by the Health Research Board (HRB) which is the government agency responsible for funding and co-ordinating medical research in the country.
According to Dr Simon Wong, who is leading the project at the ICHEC, Irish health services have much room for improvement with “barriers to data sharing and linking health datasets”.
This, he said, includes “siloed datasets, inconsistent application of existing legislation, privacy concerns, and different interpretations over data protection”.
Minimal use of ‘unique identifiers’ and the lack of a “formal and secure infrastructure to integrate, link and support remote access to data” for research, has led to valuable projects being “inordinately delayed” or in some cases abandoned.
“DASSL improves 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,” he added.
ICHEC said that a public consultation, including a Public Advisory Board, will be “critical to the success of any model taken forward” and that openly sharing of the results of research projects using national data will also be “crucial to promoting use of these findings for public trust”.
Dr Orna Fennelly, an ICHEC researcher who is creating a prototype infrastructure for DASSL, said that the overall objective of the project is “to improve healthcare and public health and wellbeing”.
“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,” she said.
Commissioned by the HRB, the project will have its findings delivered by the ICHEC to shape a ‘fit-for-purpose’ Irish health information system and inform the government of any legislations and investments required.
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