‘Have your say in research’ - Patient Voice in Cancer Research regional event

The Patient Voice in Cancer Research (PVCR) brought a roadshow event to the Radisson Blu, Athlone on the evening of 21 February ahead of the (opens in a new window)Irish Association for Cancer Research annual conference. ‘Have Your Say in Research’ gave attendees an opportunity to hear ‘patient voice’ partners speak about their experience of working with researchers through the PVCR initiative.

With both a lived experience of cancer and professional expertise in communications, Mary Staunton is ideally placed to support early career researchers like PhD student, Rebecca Sheridan in writing and speaking about her work in plain English for public audiences. Mary and Rebecca spoke about working together to prepare an accessible presentation for a national competition that Rebecca went on to win.

Kay McKeon, Dr Ananya Gupta (University of Galway), Tina O'Sullivan, Dr Nicolette Warner (Irish Cancer Society), Rebecca Sheridan (UCD), Mary Staunton (UCD), Ramon Whelan, Prof. Amanda McCann (UCD)

Ramon Whelan then spoke about his experience of reviewing the public & patient involvement (PPI) section in applications for grant funding to the Irish Cancer Society as well as facilitating roundtable discussions between researchers and ‘patient voice’ partners on research projects. Irish Cancer Society PPI Champion, Kay McKeon spoke about carving her niche as an advocate and researcher alongside a career in graphic design on her cancer journey.

Tina O’Neill and Dr Nicolette Warner spoke about their experience of working together on doctoral research involving the BRCA gene in breast cancer. Both Tina and Nicolette spoke about the positives benefits to each of them. Through Nicolette, Tina was able to connect with a wide network of patients on the island of Ireland while Nicolette gained valuable insight to Tina’s lived experience for her project.

Dr Ananya Gupta from the (opens in a new window)University of Galway recounted the iterative progression of her research to develop a device to measure white blood cells that patients can easily use at home to monitor their response to treatment. Low white cell counts (neutropenia) are a feature of chemotherapy and make it more difficult for the body to fight infection. Patient feedback at regular stages of the development process has allowed Dr Gupta to tailor the device so that it will have the most benefit to patients when launched.

William Gallagher, UCD Professor of Cancer Biology; Deputy Director, (opens in a new window)Precision Oncology Ireland and Co-Lead, (opens in a new window)All-Island Cancer Research Institute spoke about the importance of PPI, the role that patient voice partners will play in this new initiative and the benefits of learning from the experience of colleagues in Northern Ireland who have been working together with patient voice partners to embed lived experience in research over many years.

The (opens in a new window)East Galway Mayo Cancer Support group were on hand to provide practical and emotional support at the event. The conversation was facilitated by Professor Amanda McCann, UCD School of Medicine and Fellow, UCD Conway Institute and Elaine Quinn, Institute Manager (Communications & Education). Anyone interested in joining the PVCR network can sign up on www.ucd.ie/patientvoicecancer