Cancer patient advocates from 26 European countries, active across a wide spectrum of cancer types, spent three days in July at the first training course, developed and run by advocates.
The intensive training ‘Academy’ was organized by WECAN, an informal network of leaders of cancer patient umbrella organizations, of which INCA is a member. Ambitious and forward-thinking as it was, the academy can be considered a milestone for European advocacy in many ways.
The course sessions covered essential practical skill sets: how to establish, manage, fund and run a non-profit organization, how to gather patient- generated evidence, how to get their voices heard. A primer in healthcare systems, policy and access to new treatments across Europe was also offered. The advocates were introduced to the world of medical research, drug development, clinical trials, evaluating evidence, and patient involvement in research.
The course gathered people with varying experiences and needs: leaders of national and/or umbrella organizations who were looking to train up their teams; patients who are interested in setting up an advocacy organization.
INCA had 5 participants in the educational initiative: Mette Jackson (CarciNor Norway), Mark McDonnell (NET Patient Network Ireland), Fabienne Pfyffer and James Nagelmackers (Victory NET, Switzerland) and Teodora Kolarova (INCA Executive Director).
Half the presenters were patient advocates themselves. The topics and presentations were extremely relevant, and delivered with notable passion and motivation. The content and the structure of the WECAN Academy built on work done by many different groups of patient advocates over previous years.