Health and social care (HSC) data research has seen a rapid and vibrant expansion in Northern Ireland (NI), making huge strides in both discovery and policy influence. Together with major investments and strategic partnerships, an ambitious innovation agenda is underway in the region to improve the public’s health.

“We came from a low base,” explains Mark Lawler, Professor of Digital Health, Queen’s University Belfast, and Co-Lead of HDR UK’s Regional Network NI.  Professor Lawler also co-leads the Big Data for Complex Diseases Driver Programme for HDR UK.

“When I arrived in NI, accessing data involved physically working on a computer in a room with no online capability. But as part of HDR UK’s family, we were able to combine and expand expertise, working with colleagues and collaborators to transform Northern Ireland’s HSC digital landscape.”

A key digital transformation driver has been the region’s new encompass programme, providing a single electronic health record for everyone in NI, now adopted across all five hospital trusts in the region.  This pioneering strategy makes NI the first devolved nation to comprehensively combine health and social care records.

“Having data for entire acute and community clinical pathways provides unique insight into care delivered and patient outcomes,” says Professor Michael Quinn, who led the encompass development.

“Electronic coding at source, combined with primary care data access in defined circumstances, accelerates NI’s ability to deliver data-driven epidemiological, and prospective, cohort studies. This is a step-change in NI’s digital capabilities.”

Infrastructure empowering HSC data research

Establishing HDR UK NI was a crucial first step, expanding vital opportunities for knowledge-sharing and collaboration.  “Through our fruitful partnership with Swansea University and their SAIL Databank (Secure Anonymised Data Linkage databank), we secured a grant from HDR UK, and adapted our Honest Broker Service to deliver an online, SAIL-like environment for Northern Ireland’s HSC data analysis,” says Professor Lawler.

This contributed to the development of the NI Trusted Research Environment (NITRE), a secure platform which enables approved researchers to access and analyse anonymised data.  Placing NITRE within the region’s HSC Data Institute empowers researchers to analyse fully integrated, longitudinal, primary and secondary care data within the platform more efficiently – and has been a key part of the region’s HSC Data Strategy.

“NITRE promotes safe data use with clear patient benefit, fostering data innovation to HSC needs and priorities,” says HDR UK Co-Lead for NI, Dr Frances Burns.

“Engaging our public, alongside NITRE and the Administrative Data Research Centre NI (a Queens/Ulster University partnership), has also enabled a Northern Ireland Public Data Panel – promoting wider public discourse on the use of health data,” adds Dr Burns.

Patients push for use of their data

“Northern Ireland has extensive longitudinal records from primary and secondary care – probably the best in the UK,” says Professor Lawler.  “We must be able to use it for research, or we risk failing patients and the public in a fundamental way.”

For members of NI’s Cancer Research Consumer Forum, like cancer survivor Debbie Keatley, the importance of advances in data infrastructure and analysis are well understood.  “Cancer patients and survivors know research is why many of them are alive today. But in NI it’s been too difficult for too long to use patient’s data for research – that’s been hugely frustrating.  But thankfully, things are changing!”

Deploying data to influence policy

Professor Lawler and collaborators have also demonstrated how health data can provide vital insights and influence policy.  Using UK-wide health economic data, they showed that allowing treatment breaks for the drug cetuximab, prescribed for advanced bowel cancer, could both improve patients’ quality-of-life and save the NHS £1.2bn. These data were crucial in prompting the NHS to change its regulations.

“While cost was a very important factor, for some patients this will make the difference between going through hell and coping. This shows our research is working for patients,” says Professor Lawler.

This work won HDR UK’s Impact of the Year award, and is also informing the Big Data for Complex Diseases Driver Programme at HDR UK, which funds a research fellowship studying the economic burden of cancer and other common diseases.

New investments and partnerships

The momentum for harnessing data for public benefit continues to build across NI. Belfast Region City Deal supports several innovation centres to deliver health and economic benefits.  One such centre, Momentum-One-Zero, where Professor Lawler is Health Lead, unites health and life sciences researchers, computer scientists and cyber-security specialists, using data to address health’s greatest challenges.

“Momentum-One-Zero, a £70M investment, sits at the convergence of AI, cyber-security, and wireless – fuelled by data,” says the centre’s Executive Director, Dr Stephen McCabe. “We will translate world-class research in Queen’s into deep-tech solutions, transforming NI’s health sector.”

Cultivating an all-island approach

Looking beyond Northern Ireland’s boundaries, Momentum-One-Zero and partners recently won a £10M, cross-border, Peace-Plus Bid, to establish ONEHEALTH, a Digital Innovation Hub.

Further work is already underway with scientists across Ireland, driving all-island data sharing and analysis approaches. The All-Island eHealth Hub for Cancer (co-led by Professor Lawler) is creating Trusted Research Environments and common data models to empower joint cancer research approaches across the island.  “We’re coalescing our complementary skills against cancer, our common enemy,” says Lawler – who has spearheaded multiple data-driven cancer research initiatives.

“Our mythical Giants gave us the Causeway,” adds Professor Lawler, “but today’s digital innovators are blazing new and groundbreaking trails across Northern Ireland and beyond.”