All Island Forum on Cancer Data; Conference Report

Katie Cremin, Cara Marshall

The inaugural All-Island Forum on Cancer Data, held at the University of Limerick on the 14 January 2025, marked a major milestone in cross-border collaboration for cancer research and patient care. Drawing together over 200 participants, including global experts, healthcare professionals, researchers, policymakers, patient advocates, and industry leaders, the event underscored the transformative potential of data-driven innovation in cancer care across the island of Ireland.

Hosted by the All-Island eHealth-Hub for Cancer, a HEA funded North-South Research Program Centre of Emerging Research Excellence, the Forum was co-led by Professor Aedin Culhane (University of Limerick) and Professor Mark Lawler (Queen’s University Belfast). The eHealth-Hub brings together cancer researchers from 7 universities and 8 academic teaching hospitals, this consortium are united in a common vision, to build partnerships north and south so that health-relevant data can be efficiently utilised to better understand cancer and to use this knowledge to fuel discovery in the diagnosis and treatment of this common disease, delivering research with clinical and societal impact and the potential to drive policy change

Left to right: Professor Martin Curley, Professor of Innovation, University of Maynooth; Angela Clayton-Lea, Chief Operations Officer Cancer Trials Ireland; Professor Mark Lawler, Professor of Digital Health, Queen's University Belfast; Professor Aedín Culhane, Professor of Cancer Genomics, School of Medicine; Professor Gianpiero Cavalleri, Professor of Human Genetics, Royal College of Surgeons in Ireland; Professor Ruth Clifford, Consultant Hematologist, University Hospital Limerick; Gilles Ducorroy, Head of Real World Evidence Services, Novartis; Katie Cremin, eHealth-Hub Project Coordinator, School of Medicine; Professor Deirdre McGrath, Executive Dean of the Faculty of Education and Health Sciences, University of Limerick.

## Context

Ireland is undergoing digitisation that is going to transform healthcare. In 2024, the European Union approved the European Health Data Space (EHDS), which will create and implement new EU health data standards and require sharing of health data. Its five-year goal is to connect healthcare data, so every EU citizen has easy access to their health information, and it can be shared with doctors when needed. To prepare for the EHDS, Ireland will transform health data infrastructure and develop the Shared Care Record which will contain important medical details from GP, hospital and pharmacy records. Transitioning from paper to digital records will present challenges, but it is essential for improving patient care. Digital health is especially vital in cancer care, where precision medicine, clinical trials, and genomic testing rely on robust and interoperable data systems. Patients and advocates are increasingly calling for greater access to their health data and the development of systems that connect fragmented services and records. The stakes are particularly high for rare diseases and complex cancers where data scarcity can hinder diagnosis and treatment. Against this backdrop, the forum explored a wide range of themes including real-world evidence in cancer research, data innovation for all-island clinical trials, data driven cancer policy case studies of successful federated cancer research and cancer genomics and precision medicine.

Left to Right: Professor Mark Lawler (Queen’s University Belfast), Professor Aedin Culhane (University of Limerick), Prof. Paul Nagy (Johns Hopkins University)

## Session 1: Connected Data Saves Lives

This session explored how comprehensive, interoperable data systems leads to more effective care, earlier diagnosis, and broader clinical trial access. Key themes included the need for digital infrastructure, the role of OHDSI in standardising data globally, and the importance of giving patients access to their own health records.

The session was chaired by Prof. Aedin Culhane and speakers included Prof. Mark Lawler, (Queen's University Belfast), Prof. Paul Nagy (Johns Hopkins University), Angela Clayton-Lea (Cancer Trials Ireland) , Debbie Keatley, (patient advocate, CRUK) Dr Ethna McFerran, (Queen's University Belfast).

Debbie Keatley, (patient advocate, CRUK)

## Session 2: The Impact of Digital Transformation in Cancer

Given Ireland’s currently fragmented, paper-based health system, this session tackled the urgent need for digital infrastructure, highlighting the significant challenges posed by the existing siloed data systems and how shared digital platforms can drive better research and treatment outcomes.

The session was chaired by Prof. Asieh Golozar (Northeastern University) and speakers included Prof. Ruth Clifford (University Hospital Limerick), Xose Fernandes (IQVIA), Prof. Martin Curley (Maynooth University), Dr. Damien Bennett (Queens University Belfast), Prof. Deirdre Murray (National Cancer Registry Ireland) and Dr. Stelios Theophanous (Leeds Teaching Hospital).

Left to Right: Dr. Damien Bennett (Northern Ireland Cancer Registry, Queens University Belfast), Prof. Deirdre Murray (National Cancer Registry Ireland)Shape

## Session 3: Fast-Tracking Genomics in Precision Medicine.

This session explored the rapidly advancing field of genomics in cancer treatment, emphasising the necessity of integrating genomic testing into routine care to allow patients access the most effective, targeted therapies.

The session was chaired by Teresa Maguire (Health Research Board), and speakers included Prof. Aedin Culhane (University of Limerick), Prof. Gianpiero Cavalleri (RCSI), Prof. Asieh Golozar (Northeastern University), Brendan Reardon (Dana Farber Cancer Institute), Prof Lesley Anderson (University of Aberdeen) and Prof. Simon Lawler (Queen’s University Belfast).

Azieh Golozar (Nemesis Health, Northeastern University)

## Session 4: Real World Evidence for better treatments- barriers and opportunities

Giles Ducorroy (Novartis) opened the final session by outlining the promise of real-world evidence (RWE) - the analysis of routine health data to improve clinical outcomes. A panel of industry leaders, chaired by Gwynne Morley (IQVIA), including Orlaith Gavan (Pfizer), David Walsh (AstraZeneca), Catherine Mahoney (Eli Lilly) and James Murphy, (AstraZeneca) discussed how Ireland can become a hub for RWE research once its digital systems are in place.

Professor Aedin Culhane (University of Limerick)

## Proposal for an OHDSI National Node

A significant milestone announced at the forum was the proposal to establish an Observational Health Data Sciences and Informatics (OHDSI) National Node, the first of its type on the island of Ireland. This will align Ireland with 15 other European nations currently participating in OHDSI, enabling, standardised methods for data collection and analysis, national-level coordination of health studies.

## Conclusion

This Forum is not only a beginning but a call to action: to build the systems and partnerships that will turn connected data into saved lives. While challenges remain - including fragmented data systems and public concerns about data access - the Forum demonstrated a clear consensus: integrated, patient-centered, and research-informed digital infrastructure is essential to improving cancer outcomes.

## Acknowledgements

This conference was organised by Professor Aedin Culhane (University of Limerick) and Professor Mark Lawler (Queen’s University Belfast) on behalf of the All-Island eHealth-Hub for Cancer, funded by the HEA funded North-South Research Program. We would like to offer sincere thanks to our conference sponsors, BD Biosciences, CloudCIX and IQVIA.