Irish patient involvement initiative connects more than 1,850 people with researchers to over the last decade, ensuring their experiences are fed into the research process
Involving patients in cancer studies has challenged assumptions and asked questions that otherwise would not be considered, the founder of a platform for increasing patient participation in the research process has said.
Marking ten years of Patient Voice in Cancer Research (PVCR), Prof Amanda McCann said that patients bring a unique experience to clinical studies ‘that science alone cannot provide’.
She made the comments ahead of a special
She made the comments ahead of a special event to celebrate the public and patient involvement initiative, taking place in UCD on Saturday.
“When we established Patient Voice in Cancer Research ten years ago, we wanted to create a space where people with lived experience of cancer could sit alongside researchers as equal partners,” she said.
“We recognised that patients and their families bring a unique expertise that science alone cannot provide.
Over the past decade, we have seen
“Over the past decade, we have seen the difference that this partnership can make. Patients challenge assumptions, highlight questions researchers might not otherwise consider and bring a perspective that helps ensure research is relevant to the people it is ultimately intended to serve.
“This is not about simply asking patients for their opinions at the end of a project. It is about recognising their expertise and involving them meaningfully across the research cycle.”
PVCR is a coalition across universities, hospitals, research organisations, charities and patient communities to improve cancer research. The platform brings people with lived experience of cancer into meaningful partnership with researchers, clinicians and allied health professionals, helping to change the way cancer research is conceived, developed and communicated.
Since its establishment in 2016, PVCR has organised
Since its establishment in 2016, PVCR has organised events that have engaged more than 1,850 people to give feedback to research groups; delivered training for 147 researchers and 105 patient partners; and supported the co-authorship of scientific publications with patient partners.
Through its network of patients, survivors, families, carers, advocates, researchers, clinicians and cancer charities, PVCR has created opportunities for patient experiences to influence research at different stages.
Dr Ananya Gupta benefited from patient feedback when developing a device that patients could use in the home to detect and monitor low white cell count after chemotherapy.
Learning directly from patients helped us to address
“Learning directly from patients helped us to address what truly matters to people affected by cancer,” the University of Galway researcher said.
“It helped us to design a medical device that would not only address the issue, provide better management and clinical outcomes, but also be portable, minimally invasive and easy to use.”
Ramon Whelan is a Dublin-based patient advocate who has been involved in the PVCR since 2016. He said: “PVCR gives patients the confidence to play an active role in research as equal partners.
Bringing your lived experience to research projects gives
“Bringing your lived experience to research projects gives scientists a very different perspective. I love seeing how new findings are being progressed so that if any of my nephews were to get testicular cancer, their journey to recovery will be better than mine.”
Saturday’s anniversary event will bring together patient partners, researchers, cancer advocates, pharmaceutical industry and communities to celebrate the contribution of the PVCR community and consider how meaningful patient involvement can be strengthened in the years ahead.
Cancercancer researchcancer studiespatient advocatesPatient Voice in Cancer Research (PVCR)research2026-11-07Michael McHale
