Brain Tumour UK was highly complimented to have been awarded one of 33 Patient Advocate Participation Grants made by ECCO - the European CanCer Organisation, to enable cancer patient organisations to attend the 2011 European Multidisciplinary Cancer Congress in Stockholm in September.

Luckily, as I have been to many congresses whilst working in the pharmaceutical industry, I was not intimidated by the scale of this event: nearly 16,000 delegates, 3000+ presentations, 700+ speakers and 33 different topic ‘tracks’, with 15 running in parallel at any one time!

The award covered my registration, travel and accommodation costs for two nights and by travelling very early and late I managed to get nearly three days at the Congress. As I have a special interest in research, I found it invaluable to be able to move between the various tracks, usually starting early in the morning with “teaching lectures” before attending most of the Patient Advocacy/Ethics sessions and fitting in visits to the posters and exhibition during any gaps. Even so, there were times when I wished I could have cloned myself as the CNS, Oncopolicy and Drug Development tracks were also of interest although I have been able to listen to some webcasts subsequently.

I was particularly interested in talks about patient participation in clinical trials. Although there are issues to consider before taking part in a trial, there are many benefits, such as extra monitoring and access to treatments not otherwise available. The proportion of brain tumour patients taking part in trials is much lower than for other types of cancer and we’d like to ensure patients are at least given all the information and offered the chance to take part.

Another major talking point was social networking and highly controlled websites ("walled gardens") which are not only used by patients wanting to chat but to help collect patient-reported outcomes such as quality of life and adverse side effects on a longitudinal basis. Once aggregated, this data forms the basis of a completely new type of evidence to complement that from traditional controlled clinical trials.

A hallmark of this Congress is the inclusion of debates when the points for and against a motion are presented, followed by an audience vote. I found this style of presentation clear and impressive when used for technical subjects, for example, the use of whole brain irradiation. There was also a courtroom-style debate: “Patient Information on Trial”. Unfortunately, due to the somewhat unbalanced audience (it was a pity that few physicians and scientists attended the Patient Advocacy sessions) and light-hearted style, the topic was perhaps not given the serious attention it deserved. 

A minor niggle: the awards were made at a late stage, after the deadline for application to the Congress hotel accommodation bureau. Hence, finding a hotel within the amount of the award was nigh on impossible.

On behalf of Brain Tumour UK, I would like to thank ECCO for this opportunity.

Maryanne Roach - Trustee, Brain Tumour UK