January The Future of Secure Linked Data Analysis to Improve Health Services in Ireland

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

 A pilot project funded by the Health Research Board (HRB) to design and develop the infrastructure needed to share and link data securely, is being led by the Irish Centre for High-End Computing (ICHEC) hosted by NUI Galway. It will design and test the major infrastructural elements for safe use and linkage of these different data sets using synthetic data, such as fake data that resembles the characteristics of real health datasets

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.

In the Irish health and research ecosystem we routinely collect hospital data, disease registry data, data from longitudinal studies and surveys, census data, administrative data – but currently little can be done beyond their collection and stated use without being in breach of data protection legislation or ethical guidelines.

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. The fundamental question is; how can we ensure data is used or shared safely, ethically and legally? This Proof of Concept initiative will create the blueprints for a future infrastructure in Ireland that will ensure safe access to health data and develop ways to share or link existing data responsibly for the benefit of people’s health and patient care.”

The pilot project 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)

The project represents the first steps to establish a DASSL infrastructure that facilitates the linking of multiple sensitive datasets in a safe environment to harness new insights from existing data. This will greatly enhance the ability to support health service planning and delivery and provide evidence for policy. Similar infrastructures and services are already in place and widely used across Europe, Canada and Australia, but each country would have its own unique requirements and environments.

“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,” says Dr Morrissey.

The two-year project will design and build a prototype technical infrastructure to demonstrate how secure, controlled access for researchers to routinely collected health and social care datasets can be implemented in a safe environment for new types of data analyses that have been intractable in the past. The goal is to lay the foundations for a national infrastructure for data access, sharing, storage and linkage of sensitive health, social care and related data in line with legal and ethical requirements and provide guidelines for the upscaling of the model.

A key aspect of the project is to engage with a wide range of stakeholders including 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.

Dr Simon Wong who leads the projects at ICHEC and hosted by NUI Galway, said:“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.”

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.”

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.

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 voiced the particular 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-utilised in health services planning, clinical practice and evidence for policy.

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