Co-creating patient partnership within a national cancer trials network: Experience from Cancer Trials Ireland in partnership with the Irish Cancer Society.
Abstract
11061 Background: Structured patient partnership is increasingly recognised in oncology research, yet less is known about how cancer trials groups and cancer charities can collaborate to sustain partnership system-wide. Cancer Trials Ireland (CTI) has established a patient partnership model through its Patient Consultants Committee, supported by the Irish Cancer Society (ICS), enabling integration of research infrastructure, charity support, and advocacy. Methods: The development and implementation of patient partnership at CTI from inception in 2016 was reviewed. The role of the ICS in enabling this model through funding, strategic alignment and public engagement was considered. Organisational learnings, barriers and facilitators to integration, research and strategic outputs, public outreach, clinical trial impacts, national and international collaborations, and engagement with early career investigators were synthesised from descriptive programme data and documented outputs. Results: By 2026, 33 patient partners were embedded across all adult Disease-Specific Subgroups, with patient and ICS representation in CTI governance. Key facilitators included a funded coordination role, enhanced partner recruitment, aligned public messaging, shared advocacy for clinical trial access and funding, and international research network engagement. Barriers to integration included challenges in patient diversity, competing commitments, and sustainable funding. Several were mitigated through partnership resourcing, advocacy and alignment of strategic priorities. Since 2023, patient partners have contributed to four investigator-initiated trial concepts and participated in Trial Management Groups. They contributed to grant applications, trainee research projects, and the development of a CTI climate change charter. Five patient-led, trainee-integrated research projects were delivered, resulting in international conference presentations and peer-reviewed publications. The CTI-ICS partnership supported sustainability and visibility through public engagement and policy activity, including contributions to the National Clinical Trials Oversight Group, engagement on GDPR barriers, election manifesto advocacy, and the Value of Cancer Trials campaign (co-launched with ICS and a patient partner). These findings demonstrate feasible integration of patient partners into a national cancer trials network at scale. Conclusions: A structured partnership between a national cancer trials organisation and a cancer charity can accelerate and sustain patient partnership beyond individual studies, embedding patient perspectives across trial selection, development, and dissemination. This experience complements cooperative group frameworks and offers a replicable approach for oncology research systems.
Article Details
Journal Info
Journal of Clinical Oncology
Lippincott Williams & Wilkins
Authors (20)
Emer Mulvaney
Cancer Trials Ireland, Dublin 2, Ireland
Patrick Kivlehan
Cancer Trials Ireland, Dublin 2, Ireland
Claire Kilty
Clara Forrest
Cork University Hospital, Cork, Ireland
Claire Hopkins
Department of Otolaryngology–Head and Neck Surgery, Guy’s and St. Thomas’ Hospital, London
Angela Clayton-Lea
1Cancer Trials Ireland, Dublin, Ireland
Amy Nolan
Irish Cancer Society, Dublin, Ireland
Nikolett Warner
Irish Cancer Society, Dublin, Ireland
Jacinta Marron
1Cancer Trials Ireland, Dublin, Ireland
Olivia McLoughlin
1Cancer Trials Ireland, Dublin, Ireland
Ken Rogan
Cancer Trials Ireland, Dublin 2, Ireland
Martin Sweeney
Cancer Trials Ireland, Dublin 2, Ireland
Miriam Staunton
Cancer Trials Ireland, Dublin 2, Ireland
Seamus Cotter
Cancer Trials Ireland, Dublin 2, Ireland
Siobhan Gaynor
Cancer Trials Ireland, Dublin 2, Ireland
Virginie Sarah Adam
Breast International Group, Brussels, Belgium
Carmela Aves Caballero
Breast International Group, Brussels, Belgium
Frances Kent Duane
St. Luke’s Radiation Oncology Network and Trinity St. James's Cancer Institute, Dublin, Ireland
Paul J. Kelly
Faculty of Science and Technology and MESA+ Institute for Nanotechnology, University of Twente , P.O. Box 217, 7500 AE Enschede,
Seamus O'Reilly
Cancer Trials Ireland and Cork University Hospital, Dublin, Ireland