[What training does a patient need in order to participate in an HTA process?]
Jan Geissler – Patient advocate and Project Director for European Patients’ Academy on Therapeutic Innovation (EUPATI)
I think it us very important that we train patient advocates on the process, because health technology assessment is a very complex area. It’s an economical area, a very methodological area, where people can’t go in there just with a wish. They need to understand how the process works. They need to know how they can bring in the specific patient perspective into that process.
And that requires an understanding. That requires how does HTA work, what are the questions being asked, what I’m being expected to do as a patient advocate. What can I ask for, and what probably doesn’t make sense to bring in here because it’s probably sitting elsewhere in the regulatory process. And that’s why I think education like we’re doing in EUPATI is very essential.
Mary Baker – Immediate Past President European Brain Council; Patron of the European Parkinson’s Disease
I think the biggest challenge for the patients is to learn when it is best to talk about your disease on behalf of the people that you represent, and when is the moment to talk about societal impact.
Eibhlin Mulroe – CEO, Irish Platform for Patients Organisations (IPPOSI)
I suppose what they need, first of all, is to understand what the process is. It’s very hard to find a one-size-fits-all course on HTAs for Europe. So it is complex. And that’s where I would say EUPATI is going to be really important.
But the national liaison teams and the EUPATI platforms which we’re developing in each country are going to be really important, too. Because that’s where our patient leaders who have gone through courses in EUPATI can go back to their home countries and really talk to their agencies there, so that they will develop training courses with patients on the ground because those systems are different depending on where you are.