The Conroy–Hastings Memorial Session: Placing Patients and Their Data at the Centre

Feb 10, 2026 · MIRIAM STAUNTON

About the Event: Placing Patients and Their Data at the Centre of the Digital Cancer Revolution

The Conroy–Hastings Memorial Session at the All-Island Cancer Data Forum was a powerful reminder that while data can transform cancer care, it is people, advocacy, and lived experience that give that data meaning. The session was ably facilitated by Siobhán Gaynor, Advanced Breast Cancer Advocate, and Aidan McCormick, Chairperson of the Northern Ireland Cancer Research Consumer Forum, whose thoughtful stewardship ensured a strong patient-centred focus throughout the discussion.

Remembering Niamh Conroy and James Hastings

The session was opened by Miriam Staunton, Chair of UCAN Ireland, who spoke movingly about the loss of two founding UCAN members—Niamh Conroy and James Hastings—who died just three days apart in November 2025. Both Niamh and James were instrumental in shaping UCAN Ireland’s early focus on access to innovative medicines, fairness in reimbursement, and the belief that patients must be active partners in decision-making. Their advocacy was rooted not only in evidence, but in humanity and action. In their memory, UCAN Ireland announced the establishment of the Conroy–Hastings Prize, which will be awarded from 2027 at a patient-facilitated session to individuals or teams who embody the shared values of Niamh and James: action, participation, and meaningful patient involvement.

Advocacy: Bringing Data to Life

Miriam spoke about the power of advocacy to drive change, particularly when patient stories are used to bring data to life. She shared findings from a UCAN-led survey of over 1,200 cancer patients, which revealed a striking and consistent message: Over 90% of respondents want easy, near real-time access to their own health data, across all data types—including diagnoses, scan results, pathology, and genetic testing. This demand cut across cancer types, ages, and stages, reinforcing that access to personal health data is not a niche concern, but a foundational requirement for patient-centred care.

Designing Patient-Ready Digital Systems

Katie Crowley, Associate Professor Computer Science UL, explored what it means to build patient-ready portals within the context of the European Health Data Space (EHDS). She outlined the rights, obligations, and opportunities EHDS creates for patients, while making it clear that legislation alone is not enough. Drawing on implementation experience, Katie highlighted why patient portals often fail: complexity without clarity, low transparency and poor usability. Her message was direct: systems designed for patients but without patients will not succeed. True digital empowerment requires co-production, simplicity, and trust.

A Vision for Patient-Centred Digital Public Services

Drawing from her presentation, Caitríona Wray (Department of Health) placed the session within a broader European vision of person-centred digital public service delivery. She described the EHDS and the EUDI Wallet not merely as technical infrastructure, but as gateways to patient autonomy—enabling individuals to securely access, understand, and use their health data across borders and systems.

From Policy to Practice: Making Data Useful in Real Time

Amy Nolan of the Irish Cancer Society emphasised the importance of real-time data collection to support both national policy and day-to-day clinical decision-making. She highlighted how delays, fragmentation, and reliance on retrospective datasets limit the ability to respond to patient need, evaluate services, and plan equitably.

Learning from Northern Ireland: Progress Is Possible

A further perspective came from Prof. Micheal Quinn, who shared learnings from the Encompass rollout in Northern Ireland, where Electronic Health Records have now been implemented across all trusts. He spoke about how this has transformed his workday as an NHS consultant, describing the change as a cultural shift as much as a technological one. The timelines achieved in Northern Ireland were particularly striking, demonstrating that national-scale digital transformation can be delivered when there is leadership, clarity, and commitment. The message for Ireland was unambiguous: with lessons already learned, we can—and should—move faster. As cautioned during the session, we must not sacrifice patient health on the altar of privacy or misapplied GDPR concerns.

Making the Invisible Visible: Blood Cancer Data

Prof. Ruth Clifford, Consultant Haematologist at University Hospital Limerick, illustrated both the challenges and possibilities of cancer data through the lens of blood cancers. Despite blood cancers accounting for over 10% of all invasive cancers in Ireland, they remain under-represented in accessible datasets and national reporting. Ruth described how, even with limited routine data access, her team has built significantly richer insight into blood cancer cohorts—demonstrating what is possible through clinical leadership, collaboration, and innovative data curation. She highlighted the complexity of haematological malignancies, the rapidly evolving treatment landscape, and the critical role of real-world evidence in informing equitable access, service planning, and research.

A Shared Call to Action

The Conroy–Hastings Memorial Session was both a tribute and a challenge. It honoured two advocates whose legacy demands that we do better, and it set out a clear direction of travel: patients must be at the centre of cancer data, digital health, and access pathways.