More than 100 cancer survivors and their families joined health care professionals, researchers, patient advocates, funding agencies and charity groups at an open forum in UCD on April 13th.
The discussion focused on placing survivorship at the heart of the research agenda and giving participants the opportunity to voice the questions and concerns that matter most to cancer patients and are likely to improve the relevance of cancer research.
A key message from participants is that there should be a re-balancing of the Irish research portfolio to reflect the entire cancer journey from prevention to treatment to survival in what is fast becoming a chronic disease globally.
The concept of public and patient involvement (PPI) in research is relatively new in Ireland. PPI describes a whole variety of ways in which researchers can engage with the people for whom their research is relevant. It is an important step in ensuring that the real life experiences of patients are considered in decision-making processes around research.
Participants also had an opportunity to meet with cancer researchers and hear about their work as they toured the laboratory facilities in UCD Conway Institute prior to the facilitated round-table discussion forum in the UCD O’Brien Centre for Science.
Speaking at the event, Professor William Gallagher, Director, UCD Conway Institute said, “We welcome the opportunity to listen to your experiences in the cancer journey and hope that the shape of future research in Ireland will be guided by the sentiment—”Do nothing about me, without me”.
A report capturing the key points of the discussion and recommendations to consider in the future is now available from the event organisers. These pertained to cancer related information, supports, clinical trials and research.
The next meeting takes place in October where patients are invited to participate in workshops to specifically address the issues raised in such as a way as to give clarity and guidance for cancer patients and their families.
Date for Your Diary: The Patient Voice in Cancer Research II
October 19th 2016 (10am – 1pm) UCD Conway Institute University College Dublin
Organised by UCD Medicine Research, UCD Conway Institute, Systems Biology Ireland & BREAST-PREDICT, the Irish Cancer Society’s Collaborative Cancer Research Centre.