Ms Eibhl?n Mulroe:

This is important. We robbed the Northern Ireland cancer patients forum’s terms of reference in the Republic of Ireland. In Cancer Trials Ireland, we high-tailed it up to Belfast, saw what Margaret Grayson and Mr. McCormick were doing up there, and we now have a patient consultants committee within Cancer Trials Ireland, using exactly the same mode of action. We learned from the team in Belfast. We have people – patients – who sit in our closed meetings with doctors and researchers and review the trials. They are involved in looking at the protocols.

Sarah McLoughlin is our public patient involvement, PPI co-ordinator. We have a patient leading a trial and a study at the moment. It was her idea in regard to metastatic breast cancer. She is leading it with the doctors. On the question as to whether patients knew what happened to their research, under legislation, we have to tell patients. We have to write to patients at the end of the trial and tell them what happened. There is a new regulation under clinical trials at European level which is making it even more transparent, so the public can go online and see exactly what trials are happening, who is running them and what hospitals are involved, and the results are made public. That is a campaign that has been going on for years. It is really important the public knows where the money goes, but that the patients know what happened. If I volunteered on a trial, I would want to know what happened, and you would have every right to know. These were really good questions, and I appreciate it.