|Organisation||Leukemia Patient Advocates Foundation|
|About||Jan Geissler an activist in patient advocacy. He is founder and managing director of Patvocates, acting as advisor on patient advocacy, health policy and social media. From 2012-2017, he has been the Director of the 'European Patients Academy' (EUPATI), which has developed patient education about medicines development processes. He is now coordinating the team that takes change of the evolution of the EU-wide EUPATI programme and leads the German EUPATI platform. He is also work package leader of the new IMI2-funded EU project HARMONY on big data for better outcomes in hematology and a patient representative in the EuroBloodNet ePAG. After his university diploma in Business studies in the UK and Germany in 1999, Jan held various management positions in telecommunications, R&D and media think tanks before he focused his professional life on patient advocacy in 2008. Being a leukemia survivor since 2001, Jan co-founded LeukaNET/Leukaemie-Online.de in 2002, the European Cancer Patient Coalition in 2003, the CML Advocates Network in 2007 and the Leukemia Patient Advocates Foundation in 2011. In the Leukemia Patient Advocates Foundation, he acts as trustee and as member of the CML and ALAN Steering Committees. He is representing patients in various advisory boards and committees e.g. two Expert Groups of the European Commission as well as advisory boards of ECCO, ESMO, EORTC, Berlin Institute of Health and the International CML Foundation. He is also a member of the European Hematology Association's (EHA) European Affairs Committee and editorial boards of three scientific journals.|
Individual pledge to Patients is a demonstration unifying the whole research community with the same approach of a personal commitment to work with patients for patients. Taking the Pledge to Patients means looking at your everyday activities and asking, “is the patient perspective clearly addressed in everything that I do?” Taking the Pledge to Patients means committing to simple, measurable and sustainable patient-centred principles, that will lead to better and more meaningful patient and healthcare outcomes.
Making a Pledge to Patients involves commitment to 3 guiding principles: listening to patients, co-creating strategies and solutions with patients, and communicating openly and clearly with patients. Are you ready to commit?
I have been running our online platform for German-speaking leukemia patients for more than 14 years, and have helped to found and grow the CML Advocates Network for more than 10 years. I am supporting CML patients on a daily basis. This keeps me close to the real need of real patients, over and above being a cancer survivor myself now for 16 years...Work in progress
I am committed to facilitate patient engagement in R&D by increasing the "system readiness" in patient organisations, academic groups and pharma to involve patient experts in a meaningful way.Work in progress
I am involved in a number of educational activities and networks that work on patient information and patient empowerment, including EUPATI, PFMD, EURORDIS, Leukaemie-Online, CML Advocates Network, Acute Leukemia Advocates Network, WECAN and many more.Work in progress