Dr. Derick Mitchell:

In terms of the first question on what countries get it right, for comparative purposes it is useful to look to Scotland because of its similar size, population and genetic make up. Scotland has successfully incorporated both patient and clinician perspectives in parallel. They have managed to do it from a health care improvement perspective, which has led to the new processes within the Scottish Medicine Consortium. We would look very favourably on what it has managed to achieve in terms of incorporating more qualitative evidence and also developing a process that is far more welcoming. We had the privilege of being observers at a recent Patient and Clinician Engagement, PACE, meeting. It is similar to the rare disease technology review group but at a level up in terms of the decision making process.

As Mr. Watt suggested, there is a reluctance in the system to systematically engage with patients due to media coverage and public policy coverage. What we have been doing in more recent years is structuring the way that patients are educated and informed around this particular area in medicines research and development. We now have a growing cohort of educated Irish patients who are more than willing to engage with what we would determine as meaningful opportunities. Rather than simply plucking an individual patient from out of the blue and putting him or her on a committee, we would support a much more systematic process whereby if the opportunity for a patient perspective as part of a committee has been identified, then the patient should be supported and educated to a certain degree. As a minimum the patient should feel that it is an opportunity to be embraced. Once we get that process in place then the point about accepting that sometimes "No" means "No" for very good reasons is relevant. At the same time, there is a challenge on the patient side for any citizen in Ireland. If one's brother, mother or other family member is suffering from a rare disease, one has a right to stand up for one's relative.

There are a number of responsibilities attached to this too, particularly with regard to the way things are reported in the media. A lot of positive things are happening in this area and there are lots of new developments but if everything ends up being commented on negatively, how exactly are patients going to view our system?