Ms Eibhlin Mulroe:

It is great when colleagues say everything you were going to say, as has just happened in terms of the responses given by Professor Gallagher and Professor Lowery. To come back to the person, for the person with cancer in Monaghan who knows there is a trial happening in Derry or Belfast it is ability to be able to travel across the border and access that trial. We have had examples of that within cancer trials, where patients from the very southern part of the country travelled to Belfast because it was the only site in the country that was facilitating that particular clinical trial. Before we joined here today - members who are on Twitter might have seen this - one of our oncology colleagues in Cork asked us to bring up the issue of how to make it easier for us to refer patients cross-border because at the moment that is really tricky. In terms of the cross-border directive, the administration is in place for travel cross-border for treatment but not necessarily for cancer trials.

It can be tricky. Deputy Tóibín talked about resistance in the system, and that is certainly one of the things that is resisting at the moment, where patients can actually travel. On the other hand, we are trying to ensure we are opening trials on both sides of the Border so there is less of that.

It is an important point, that equity of access irrespective of where you are in the country, that you are not disadvantaged by where you live, by who you are or by your education. We all here share that value, that we do not want to get to that point. That is where the statistics and the data, which were mentioned earlier, become very important. It goes back to Professor Patrick Johnson, the history of why we are all here and the first memorandum of understanding, MOU, between North and South, which funded the national cancer registry. It was the first real North and South collaboration so staff in the North and staff in the South worked together, and now we have Professor Deirdre Murray, who is the head of the national cancer research registry. More resources are needed, however.

The other side of this is that when they collect data right now on the incidence of people with cancer in our system, they are looking at paper files. As Professor Mark Lawler has pointed out, we do not have an electronic health registry in the Republic of Ireland. I used to sit on the e-health board of the HSE and, to be honest, I was very frustrated at the lack of progress made on that. We need to look at and realise we can learn from the North because in hospitals in the North there is connection between patient data. Whether you are visiting a hospital in Craigavon and then you are in Belfast City Hospital, your data are in one place and are accessible. We do not quite have that yet in the South.

You may wonder why someone from Cancer Trials Ireland is saying this. When we have patients on clinical trials, we have to send our auditors to look at all of the patient notes that are relevant to the clinical trial and ensure everything that should be done is done, and practised safely. That would be so much more efficient if we were able to do that, and particularly during Covid it became so obvious because we could not get into hospitals as we were not allowed in and our recruitment to clinical trials dropped by 40% because of that. We have talked about the resistance piece. That issue is very important.

I want to come back on the piece about nurses. Clinical research nurses have been described to me by patients as like having your mother holding your hand on your first day at school. They are the most important person to a patient in a clinical trial because he or she is facing his or her clinical research nurse more often than anyone else in the treatment, yet we do not have a proper career structure for such nurses. Clinical research nurses are not treated in the same way as other nurses within the system. That could also be said for every other medical discipline like dieticians and physiotherapists who work on research within the system. Solving that problem is also something the committee could help us with.