“VOICE-Ireland put patient advocates and researchers in the same room, to look at what can be done in the future to make life better for people going through cancer treatment”
Cancer patients and survivors praise the impact of a first-of-its-kind-in-Ireland scientific course for people with lived experience of cancer.
The first all-island residential training programme for cancer patient advocates took place at the UCD Conway Institute, University College Dublin (UCD), from the 23rd to 28th of August 2026, bringing together 13 patient advocates from across Ireland and Northern Ireland for an immersive week of learning, and connecting with other patient advocates.
VOICE-Ireland (Vision On Information, Confidence and Engagement) is designed to give people affected by cancer the knowledge, confidence and skills to engage more meaningfully with cancer research and become active partners in shaping its future.
The programme combined accessible lectures from cancer researchers and academics with hands-on laboratory sessions exploring cancer biology and research methods. Participants also had the opportunity to visit the Trinity Translational Medicine Institute at Trinity College Dublin, take part in pottery and spend time together over shared lunches and dinners.
The result was a week that went beyond the science, creating opportunities for patient advocates and researchers to learn from one another and build lasting connections.
Bringing the VOICE model to Ireland
VOICE-Ireland adapts the successful UK-based VOICE model, originally developed by Independent Cancer Patients’ Voice (ICPV) at Barts Cancer Institute, Queen Mary University of London, in 2009.
The Irish programme has been co-designed by patient advocates and researchers since 2024, grounded in the principles of co-production, inclusion and meaningful collaboration. Driven by the All-Island Cancer Research Institute (AICRI), VOICE-Ireland has been developed alongside patient advocates and in collaboration with Patient Voice in Cancer Research and the Northern Ireland Cancer Research Consumer Forum.
A key principle of VOICE-Ireland is that patient advocates bring expertise of their own. While the programme gives participants an opportunity to better understand cancer research and the science behind it, it also creates space for researchers to listen to people with lived experience and understand what matters to patients and families.
“It felt very empowering”
For participants, the opportunity to engage directly with researchers and experience cancer research first-hand was a major part of the programme.
Elizabeth Osagie-Alli, a breast cancer survivor and patient advocate from Co. Cork, said:
“In my experience, professors, academics and researchers find it difficult to come down to the level that patients are at, but they did come to our level during VOICE-Ireland. They really wanted to learn from us as patients advocates and people with lived experience of cancer. It made us all feel that there was something they could learn from us, it felt very empowering.
“We also learned a lot from them. During the lab sessions, we learned about the precision that’s needed in research and everything that happens behind the scenes. It gave me a greater understanding of the work that goes into cancer research.
“VOICE-Ireland put the patient advocates and researchers in the same room, to look at what is being done now, and what can be done in the future to make life better for people going through cancer treatment. When we see that research is being done to make our lives better, and that patients can play a role in that, it makes a big difference.
“I’m grateful I got the opportunity to attend VOICE-Ireland. It’s been life-changing for me.”
For Denver Lynn, a throat cancer survivor and patient advocate from Co. Down, returning to a laboratory after 50 years provided an unexpected highlight of the week:
“I can’t be a ‘medical person’, but I have lived experience and if that can benefit somebody, then I’m happy to share it. Taking part in VOICE-Ireland felt like a way I could use my experience to help others, while also learning more about cancer research.
“I hadn’t been in a lab for 50 years – not since I was in school – before VOICE-Ireland. But I learned so much in the lab during the programme.
“I would’ve been frightened to admit it, but I didn’t understand things like cells, genes, DNA and the roles they can play in cancer. Like with my form of head and neck cancer, I didn’t realise that HPV doesn’t mean cancer. I learned it’s a virus that can cause cells to mutate into cancer.
“To actually go into a lab and look at forms of DNA – we used DNA from bananas – was incredible. It was mind-blowing, I really enjoyed it.
“VOICE-Ireland gave me everything I wanted: a better understanding of cancer, the motivation to continue with patient advocacy, and I got to meet a new group of people that I clicked with. I’d thoroughly recommend the experience to anyone. It should be rolled out everywhere; every country should have a programme like this.”
From participants to partners
Patient advocate Jacqueline Daly, a melanoma survivor from Co. Galway who previously attended VOICE in London and helped to design VOICE-Ireland, believes the programme can help transform the way patients participate in cancer research.
“When you strengthen the patient's voice, you have the potential to influence research, influence policy, and ultimately improve the lives of patients and families. That's why I'm so incredibly proud to be a part of VOICE-Ireland.
“There’s a lot of excitement about what happens when Irish patients are given the tools, the knowledge and the confidence to say, ‘We have a voice, we understand the science, and we're ready to be a part of that change’. That’s just so powerful.
“By bringing together patient advocates from around Ireland for VOICE-Ireland, we have created a community that understands science, understands research, and is confident enough to sit around the table with researchers, clinicians, policymakers, and industry – not as observers, but as equal partners. And that's incredibly important.”
This ambition is at the heart of the programme: to move beyond simply asking patients for their views and towards meaningful partnerships in which people with lived experience can contribute to the direction of research.
A collaborative, all-island programme
VOICE-Ireland is made possible through strong cross-border and cross-sector collaboration, bringing together patient advocates, research institutes, universities, cancer charities, patient organisations and healthcare stakeholders across Ireland and Northern Ireland.
The initiative is supported by AICRIstart, Breakthrough Cancer Research, the Irish Cancer Society, Precision Oncology Ireland, the All-Ireland Cancer Liquid Biopsies (CLuB) Consortium, the PPI Ignite Network, the Higher Education Authority, the North South Research Programme and Taighde Éireann - Research Ireland.
The AICRI team would also like to thank all of the contributors who generously shared their expertise and time throughout the programme, as well as the participants for their enthusiasm, openness and engagement.
Particular thanks go to Jacqueline Daly, Aidan McCormick and Debbie Keatley, whose dedication helped bring the VOICE model from Barts Cancer Institute to Ireland and played an important role in shaping the inaugural programme.
Looking ahead
VOICE-Ireland will follow a rotating model between the north and south of the island, with the next cohort due to take part at Queen’s University Belfast in 2027.
The ambition is for the programme to continue annually, expanding the network of patient advocates who have the confidence and knowledge to engage with cancer research and work alongside researchers, clinicians, policymakers and industry.
Cancer charities, research institutes, patient support groups and healthcare stakeholders across Ireland and Northern Ireland are invited to follow the development of VOICE-Ireland and engage with future cohorts as the programme continues to grow.
The first VOICE-Ireland residential week has now come to an end, but the conversations, connections and partnerships it created are only beginning.
VOICE-Ireland 2026 is the start of a growing all-island community of informed, confident and empowered patient advocates.
Profiles of the patient advocates leading the programme and members of the Steering Committee can be found on the VOICE-Ireland Steering Committee page.
