Professor William Gallagher:

I thank Mr. Molloy for the questions. I will bring Mr. McCormick in as well to hopefully support some of the comments. A potential requirement for training was mentioned. First, there are many people out there who would like to participate who have had a lived experience of cancer and want to contribute their experience to the research process. For example, I would point to the Irish Platform for Patient's Organisations, Science and Industry, IPPOSI, which is a patient organisation group that has specific programmes for getting people skilled up in training so they are more comfortable to participate. It does not mean that they have to have that experience. If, for example, people feel a bit more reticent about participating in that research process, they can go through that.

I would like to point to a very good colleague of mine, Professor Amanda McCann, who is a cancer researcher in University College Dublin, UCD. About seven years ago, she set up the patient voice in cancer research initiative, which is a joint effort between individuals with a lived experience of cancer or, say, family members, carers and cancer researchers. The original concept from AICRI came from one of the first meetings of that group, where Ciaran Briscoe is on the table. It was just a side chat about what we were hoping to do to bring people together. This is providing an opportunity where we can provide an environment where individuals with a lived experience of cancer can actively contribute to the research process.

I think Mr. McCormick mentioned that he and I just came back from the Irish Association of Cancer Research. We had a specific event on Tuesday evening where we showed case examples of where that input from the person with lived experience had a positive and significant impact in the course of research. We had multiple examples of that. The challenge is mainstreaming it. We have shown that it works but we do not have an established mechanism of supporting that. The patient voice in cancer research initiative got one year of funding from the Irish Cancer Society and then there was no subsequent funding in that space. We have these important activities but we need to provide it more universally. In addition, we have people living remotely. How do they participate? Will it all be done in major cities? We want a rotation. Ultimately, it is a critically important activity but it needs to be supported. Again, AICRI would fall in to provide support for that kind of environment.

I would like to bring in Mr. McCormick. He has experience because he does that with Cancer Focus Northern Ireland. He can speak on inputting on the process.