Jan Geissler

Being a leukemia survivor that had participated in clinical trials to survive, Jan founded the online patient community Leukämie-Online/LeukaNET (http://www.leukaemie-online.de) in 2002, which is one of the most frequented online platforms for leukemia patients in the German speaking Internet today. In 2003, he co-founded the European Cancer Patient Coalition (European umbrella association of 315 cancer patient groups, http://www.ecpc-online.org) and became its first full time director 2008. In 2007, Jan also co-founded the CML Advocates Network (http://www.cmladvocates.net), which is now connecting 53 leukaemia patient groups from all continents. He today speaks for patients in various steering committees and advisory boards. He acts as an independent EU expert reviewing FP7 projects. In his professional life, he held various managerial positions in think tanks of the telecommunications and media industry before he focused his work on patient advocacy in 2008. Today he is founder and managing director of Patvocates, acting as independent consultant in cancer policy, patient advocacy and social media

Information to Patients Debate 2010 – as if the Internet was still a walled garden

Being diagnosed with cancer, or experiencing a recurrence, often puts individuals and their families in an emotional roller coaster ride. Moreover, treatment decisions often need to be taken quickly. To make an informed choice between the bad and the ugly, patients desperately seek for quality information. Whilst the political debate around “information to patients” and “advertising” has been going on for years as if a walled garden would still exist, or could still be built around Internet websites, European patients continue to suffer from the lack of access to quality information while the alluring bait of miracle healers, counterfeit online pharmacies and door-to-door advertisers continues to be omnipresent. “Information to Patients” now requires new courage, commitment and real action now – the current EU political momentum on “Information to Patients” is timely and welcome.