Round table discussions at the Patient Voice in Cancer Research workshop on 10 April 2019
Date: 
May 8, 2019

Irish Cancer Society announce funding support for Patient Voice in Cancer Research

The Irish Cancer Society are delighted to announce that we will be providing €30,000 funding in support of the University College Dublin (UCD) Patient Voice in Cancer Research  (PVCR) Initiative in 2019. 

This initiative grew out of a clear unmet need to involve the voices of cancer patients within the scientific research process. Its main aim is to enable dialogue between patients and researchers, scientists, funding bodies and patient advocate groups so that the lived experience of cancer patients can enrich, inform and shape the research process.

As part of this funding award, the Society will be part-supporting Dr Barbara Hughes, whom has recently taken up the post of Public Engagement and Patient Involvement Officer based at the Conway Institute in UCD. Barbara holds a joint Master’s Degree in genetic studies from the University of Constance, Germany and University College Cork, and recently returned to college where she completed a PhD in human reproductive medicine at UCD.

Throughout her career as a senior embryologist and later as a researcher in reproductive medicine, Barbara has always worked in close contact with patients and believes that excellence only comes by putting patient welfare and involvement at the heart of patient services and research. One of the responsibilities in her new role at UCD will be to  work with the Irish Cancer Society to further develop the Patient Voice in Cancer Research (PVCR) initiative nationwide. “This year promises to be a very busy one for the Irish Cancer Society-funded PVCR, as we plan the development of a national patient forum as well as delivering nationwide events to promote active patient involvement in cancer research," explains Barbara.

The first of these events took place on 10 April 2019 at UCD in collaboration with the National Cancer Registry of Ireland (NCRI - based in Cork) with the aim of obtaining patient input on how to conduct a national cancer survivor survey. “The event was a great success with feedback being provided from over 60 patients and members of 10 cancer advocacy groups including Purple House, CanCare4Living, Men Against Cancer, OvaCare, Lymphoedema Ireland, ARC Cancer Support Services, Europa Donna Ireland and the Marie Keating Foundation. A report is currently being collated to inform the design of a national cancer survivorship survey to be issued later this year.”

The PVCR hope to hold a similar event to expand the reach of the PVCR into Munster and neighbouring counties. The third event will be held ahead of the 56th Annual Irish Association for Cancer Research (IACR) conference running from the 26th-28th February 2020 in Galway. “We see this as an excellent opportunity to involve cancer researchers from across Ireland as well as expanding the network of patients involved in the ICS UCD Patient Voice initiative."

Dr Barbara HughesContact Barbara Hughes - Email: patientvoicecancer@ucd.ie / Phone: (01) 716 6308