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Laying foundations for secure data linkage and sharing to improve health

The Health Research Board (HRB) is funding a pilot project to design and develop the infrastructure needed to share and link health data securely. The project will be led by the Irish Centre for High-End Computing (ICHEC) at NUI Galway.

Data is one of our most valuable national assets. However, we don’t use it to its full potential because we don’t have the right infrastructure or services in place to share, store or link data safely for research and studies that benefit society. 

This two-year project will design and build a prototype technical infrastructure to demonstrate how secure, controlled access for researchers to health and social care datasets can be implemented in a safe environment for new types of data analyses that have not been possible in the past.  

The goal is to lay the foundation for a national infrastructure for data access, sharing, storage and linkage of sensitive health and social care data in line with legal and ethical requirements and provide guidelines for the upscaling of the model. This will bring Ireland in line with international best practice exemplified by services in place and widely used across Europe, Canada and Australia.

A key aspect of the project is to engage actively with a wide range of stakeholders including public and patient groups to ensure broad awareness and consultation, to build confidence in the approach and to leverage support for the infrastructure at a national level.

According to Darrin Morrissey, Chief Executive at the HRB, ‘Gathering robust sets of health data can be expensive and time-consuming, so it makes sense to use them to their full potential. This project is the first step to establish an infrastructure that will enable us to link multiple sensitive datasets in a safe environment to harness new insights from existing data. This will greatly enhance our ability to support health service planning and delivery and provide evidence for policy.’ 

‘If upscaled and launched nationally, this infrastructure has the capacity to join the dots between the different datasets to improve people’s health and patient care at an individual and at a population level. It will vastly increase the value that can be derived from individual datasets.’ 

The pilot project, led by the Irish Centre for High-End Computing (ICHEC) at the NUI Galway, will design and test the major infrastructural elements for safe use and linkage of these different data sets using synthetic data, i.e. fake data that resembles the characteristics of real health datasets.

It will build on a model developed by the HRB called ‘DASSL’ (data access, storage, sharing and linkage) which outlines the infrastructure and services to ensure: -

  • Safe projects (valid research purpose)
  • Safe people (trusted researchers)
  • Safe data and data governance (people’s data protected)
  • Safe setting (security controls)
  • Safe outputs (disclosure control of outputs)

Muiris O'Connor, Assistant Secretary for R&D and Health Analytics in the Department of Health says, 
'The Department is fully committed to optimising the use of health and social care data, including for research purposes, and this will be a key principle included in the Health Information Systems Strategy, due to be published by the Department of Health for public consultation early in 2020.  Greater access to, and linking of, data, from healthcare administration, registers, surveys and research provides invaluable opportunities to advance science, improve patient outcomes, and inform and enhance public health. This is critical if we are to deliver and evaluate the ambitious reforms set out in Sláintecare. 

‘We believe that a DASSL-type Hub is critical to ensuring that health care professionals, managers, policy makers and researchers can optimise the use of available health and social care data in a manner that is fully aligned with the safeguards set out in, for example, the Health Research Regulations. The approach to health data access, sharing and linkage proposed by the HRB is a balanced approach which will have benefits for the public, researchers and healthcare professionals alike, and will have data privacy and confidentiality built in by-design.’

According to Dr Simon Wong who leads the projects at ICHEC, ‘This project is a major step in addressing a real gap for the use of health data for research purposes in Ireland. We will be working with a wide range of partners nationally and internationally to ensure that what we build will not just be to the highest standard, but the design incorporates feedback from the Irish health ecosystem, the general public and the research community to ensure trust in the infrastructure.’ 

ICHEC at NUI Galway, will work with researchers at the Royal College of Surgeons in Ireland, Trinity College Dublin and the Health Service Executive. Working with other national and international collaborators will also be crucial, including those based at the FutureNeuro Research Centre and the HRB Centre for Primary Research.

Professor Lokesh Joshi, Vice President for Research at NUI Galway, said: ‘ICHEC’s reputation as an internationally recognised centre of excellence in high-performance computing continues to grow. This project strongly demonstrates its focus on the economic and societal benefit which can be had from collaboration and innovative approaches.’

The DASSL model was first described in a discussion document published by the HRB in 2016 - Proposals for an Enabling Data Environment for Health and Related Research in Ireland. The document highlights the challenges in health research where policy relevant studies were abandoned or inordinately delayed, and where the use of routine health data that are collected and maintained at great cost is under-used in health services planning, clinical practice and evidence for policy.