The Patient Voice in Cancer Research III

The Patient Voice in Cancer Research is a UCD-led initiative with the goal of involving those living with a cancer diagnosis and their families in shaping and informing the future landscape of cancer research in Ireland. Through a series of open forum events, the aim is to identify the questions and needs that matter most to those living with a cancer diagnosis and those most likely to improve the relevance of cancer research. 

On April 12th 2017, 85 participants including people living with cancer and their families, health care professionals, academic and clinical researchers; clinicians, patient advocates; funding agencies, policy makers and charity groups gathered in UCD Charles Institute for the third event in this series that focused on clinical trials; explaining what they are, the types being carried out in Ireland and how patients can find out if a suitable clinical trial exists for their particular diagnosis.

Pictured: (Top, left) Lisa Tucker, Cancer Trials Ireland; Dr Robert O'Connor, Irish Cancer Society; Eibhlin Mulroe, Cancer Trials Ireland (Top, middle, standing) Dr Melinda Halasz, Systems Biology Ireland & Dr Aurelie Fabre, UCD & St Vincent's University Hospital (Top, right) Dr David Gomez, Systems Biology Ireland; Prof William Gallagher, UCD Conway Institute & Breast-Predict; Dr Rachel Bermingham, Irish Cancer Society. (Bottom, left) Cynthia O'Neill, Theya Healthcare exhibition stand (Bottom, second from left) Amanda O'Neill, UCD; (Bottom, right) Assoc. Prof. Amanda McCann, Derick Mitchell, CEO, IPPOSI.

Eibhlin Mulroe, CEO, Cancer Trials Ireland; Dr Robert O’Connor, Head of Research in the Irish Cancer Society and Derick Mitchell, CEO, Irish Platform for Patient Organisations, Science and Industry (IPPOSI) led the round table discussion.

Participants also heard from Dr Aurelie Fabre, Consultant Pathologist, St Vincent's University Hospital about the process of tissue handling in the laboratory and how pathologists can assess cancer cells using certain biomarkers.

Table facilitators then guided participants through a series of images of tissue samples treated with a coloured substance to identify particular biomarkers. From this, they were be able to identify whether the biomarker was located in the nucleus or the membrane of the cell; the extent of coloured substance in the image and the strength of colour.

The inaugural Patient Voice in Cancer Research event in April 2016 involved over 100 participants and produced a position paper with 14 recommendations in four key headings of (i) research, (ii) clinical trials, (iii) information and (iv) support services. A Patient Voice committee with full stakeholder representation including those living with a cancer diagnosis, is now established in UCD and meets regularly in an effort to progress these recommendations.

The initiative is led by Dr Amanda McCann, Associate Professor and Head of Pathology in UCD School of Medicine and Fellow of UCD Conway Institute. According to Dr McCann, “This initiative has the potential to make a significant impact on the health landscape given the representative involvement of organisations such as the Ireland East Hospital Group (IEHG) that serves 1.2 million of the Irish population; Clinical Trials Ireland (CTI), the Irish Platform for Patient Organisations, Science and Industry (IPPOSI) and the Irish Cancer Society (ICS)”.

While public and patient involvement (PPI) in research is a relatively new concept in Ireland, there are many examples of PPI in the United Kingdom and in Europe in the last ten years. Patient involvement in research can help to identify what research is important to fund, influence the way research is planned and how it will be carried out as well as improving the experience for people taking part in the research.