Oireachtas Joint and Select Committees

Wednesday, 21 November 2018

Joint Oireachtas Committee on Health

Evaluating Orphan Drugs: Discussion (Resumed)

9:00 am

Mr. John Hennessy:

What we have done so far this year acknowledges that there was an issue in regard to transparency and patient involvement. However, measures have been taken to address that, such as the expansion of the membership of the drugs group and the formal inclusion of patient representation on the group referred to by Professor Barry. Those are genuine attempts to address that issue. Ultimately, whether people experience a problem with the process probably relies more on the outcome of the process than the process itself. However, if there are further steps that we can take, such as the development of websites and greater transparency, we would be happy to explore those.