Saturday, 13 June 2015
Very honoured to have been invited to give a talk in the patient advocacy track at EHA 2015 in Vienna- on risks in innovative trial designs, so a topic very close to my heart :-).
The PA community in hematological cancers- notably in CML and Myeloma- has been and still is of great help to MPNE as we can learn a lot from organisations that have been around for considerably longer than us.
The first advocacy session was on patient participation in clinical research- the first speaker had a great online tool how to capture audience preferences via a webbased tool- something to take up :-): http://PollEverywhere.com - and was a clinician who shared how he got patients responses to take that to discussions with his ethics committee for his clinical trials.
Very revealing for me was the question about information about the results of the trials- patients overwhelmingly wanted to get informed about the results of the trial personally via email or SMS- while the ethics committee insists on protecting the anonymity of the trial participants was in the main interest of trial participants. MHMMMM.
Jan Geissler from the CML advocates network spoke about patients participating in clinical research and my talk was on the perceived risk associated with new drug development models like adaptive licensing- the presentation will be shared on the MPNE fb forum.
Douwe then presented the results from the EMA risk/ benefit assessment tool, one part of the data coming from the last MPNE 2015, the other from the conference of Myeloma Patients Europe!!!
The data is still insufficient for the sub-groups but that is definitely something for us to take up and great to hear that our data is useful for such a project! So happy :-)
In the second session, Ananda Plate from Myeloma Patients Europe (MPE) spoke about the Atlas on Access to Myeloma treatment, an MPE project where they got European Myeloma groups to collaborate to find out which drugs are available and which ones aren't - and the need for us as advocacy community to work together strategically and to get more candid about generating the necessary data to have evidence to support our demands.
H. Ludwig, a clinicians, gave a very open talk about the pricing and healthcare budget impact of new drugs- the Ipi/ Nivo combination in Melanoma was mentioned as a very familiar example to us. And he ended by suggesting a Pan-European buying syndicate to negotiate for better prices Europe-wide.
G Constantinou from the Thalassaemia International Federation made a very good comment on quality of life 'I don't want to have a treatment that gives me a quality of life just good enough to get me back to hospital'. Very true indeed.
Organisations to follow