The All-Island Cancer Data Forum brought together government, research, patient, clinical and policy leaders who agreed on the urgent need for decisive measures to reduce the cancer burden by working together to improve shared data standards, governance, and digital infrastructure to accelerate cancer control across Ireland and Northern Ireland.

Leaders at the Forum endorsed the Harnessing Cancer Data for Better Health plan, a seven-point roadmap aimed to position Ireland and Northern Ireland as a global leader in cancer data, prioritising the creation of an All-Island Cancer Data Innovation Co-Centre.

The Forum will work with partners to develop better health data information sharing between the north and south of Ireland in areas including genomics and tumour imaging data, cancer treatment options, as well as more coordinated clinical trial enrolment.

Speaking at the Forum Minister of Health for Northern Ireland, Mike Nesbitt said:

“I am delighted to welcome the All-Island Cancer Data Forum to Belfast. Our recent successful implementation of the encompass programme across Northern Ireland is already driving a digital transformation across our health service.

“We also recently launched the Cancer Research Framework Strategy which has a significant data component, and I am pleased Professor Lawler will be co-leading its implementation. Data informed cancer research and innovation leads to better outcomes for our patients.”

Cancer is the leading cause of death across the island of Ireland, accounting for approximately 30% of all deaths annually. Unless urgent action is taken, the number of new cancer diagnoses is projected to double by 2045 due to population ageing and rising risk factors.

Professor Mark Lawler, Professor of Digital Health at Queen’s University Belfast and Co-Lead of the eHealth Hub for Cancer, said:

“Ireland's cancer mortality rate remains 5.4% higher than the EU average and ranks third highest in Western Europe, despite significant improvements over the past decade. This challenge demands coordinated, data-driven intervention across Ireland and Northern Ireland.

“Our seven-point plan provides a clear roadmap that underpins a unique opportunity for the island of Ireland to be a global digital powerhouse, driving research and innovation that ensures clinical benefit for our patients and an economic dividend for our societies north and south.”   

Professor Aedin Culhane, Programme Co-Lead, eHealth Hub for Cancer and Professor of Cancer Genomics at University of Limerick, said:

“Implementing trusted and interoperable data standards is fundamental to innovation in cancer research.

“By opening communication and supporting alignment of data standards, Ireland and Northern Ireland can collectively unlock the full value of cancer data -safely, securely, and for everyone’s benefit.”

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Media inquiries to Sian Devlin at s.devlin@qub.ac.uk