News

EHA inaugurates the patient advocacy session

6 Jul 2010

In collaboration with the European Cancer Patient Coalition (ECPC) and the CML Advocates Network, the EHA introduced a new session concerning the relationship between clinicians and patients to its program. The theme of this year’s Patent Advocacy Session was ‘access to clinical trials’ and it was undoubtedly a great success.

Clinical trials are a key step in the process of developing and improving treatment - and finding cures - for cancer. There are a huge number of novel cancer therapies in hematology today. Patients with resistant or recurrent disease often seek out these trials as a means to stay alive. Furthermore, late phase observational trials are crucial to improve the evidence base and management of patients, or to provide best standard of treatment and follow-up.

The first speaker at the EHA Patient Advocacy Session was Jana Pelouchová, director of the Czech CML patient group "Diagnoza CML” gave the patients’ perspective with relation to getting information about and access to clinical trials. She discussed what patients need to know to help them lose their fear from joining trials, and what would improve "informed consent”.

Next Andras Fehervary (Novatis) presented the industry perspective or rather as he said “an industry perspective”. He admitted, “The current situation is not optimal” and discussed some of the reasons for this. He also stated that we need greater involvement of patients in the initial stages of trial design.

The physicians point of view was given by Dr. Stephen G O'Brien who expressed the frustration that doctors often experience when trying to recruit enough patients to a clinical trials. He went on to put forward a rather controversial idea which he later asked the audience to give their opinion on: “Should patients be ‘required’ to take part in clinical trials to get access investigational drugs?” We would also like to know what you feel about this please add your comments below. Finally Dr O’Brien expressed the need for better communication and said an easily accessible website with all the ongoing clinical trials in Europe, “a sort of European ‘nih.gov’”, is required.

The whole session will be coming soon to ecancer tv.