Scientists are working towards a new national data-sharing infrastructure that could 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 data sets 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) and collaborators from the RCSI University of Medicine and Health Sciences, the HSE and Trinity College Dublin are developing a proof-of-concept technical infrastructure that would allow for such data sharing for scientists in Ireland.
Known as DASSL (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 coordinating medical research in the country.
It will look to provide a single point of access to researchers and data controllers to help link health data in a safe and trusted manner, while securing patient anonymity.
According to Dr Simon Wong, who is leading the project at the ICHEC, Irish health services have much room for improvement as there are “barriers to data sharing and linking health data sets”.
This includes “siloed data sets, 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,” Wong added.
“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.”
ICHEC said that a public consultation will be “critical to the success of any model taken forward” and that openly sharing the results of research projects using national data will 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 findings will be delivered by the ICHEC with a view to shaping a fit-for-purpose Irish health information system and informing any legislation and investments required.
This article originally appeared on www.siliconrepublic.com and can be found at: https://www.siliconrepublic.com/innovation/ireland-health-data-sharing-ichec-dssl-project
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