Jan Geissler

Research Patient Advocate and Social Media Expert

Jan Geissler is founder and managing director of Patvocates, a think tank and consultancy in patient advocacy, acting as advisor on patient advocacy, health policy and social media. For the past 6 years, he has been working for the European Patients’ Forum as the Director of the ‘European Patients Academy on Therapeutic Innovation’ (EUPATI), a project funded by Innovative Medicines Initiative. EUPATI has developed educational material and training courses to educate patient and patient advocates about medicines development processes. He continues to be responsible for EUPATI’s future evolution. He is also coordinator of the work package of the new IMI big data project HARMONY, coordinating stakeholder input from patient organisations, HTA bodies, regulators and other stakeholders.

Jan studied at the University of Regensburg (Germany) and Aston University (Birmingham, UK), graduating with a university diploma in business. Jan then worked for the media company Bertelsmann, Germany. Emerging from his work in Bertelsmann’s Think Tank “mediaTechnologies”, he co-founded Bertelsmann’s in-house startup BeMobile, heading product management, business development and marketing. In 2003, he joined Vodafone Group R&D where he headed business modelling teams in Germany and The Netherlands, defining the business models of cutting-edge projects connecting media and technology. He was leading multinational and multicultural innovation projects in Europe and Asia.

In 2008, he decided to leave Vodafone and focused his professional life on patient advocacy. The reason why Jan started to engage in cancer advocacy already in 2001 was that Jan received his diagnosis of a rare cancer, Chronic Myeloid Leukemia (CML) at the age of 28 years. He joined a phase I/II clinical trial and started to translate and publish medical publications into German lay language. In 2002, he founded the online patient community Leukämie-Online/LeukaNET, which is one of the most frequented online communities for leukemia patients in the German speaking Internet today. In 2007, Jan co-founded the CML Advocates Network. It today connects 100 leukaemia patient groups in 76 countries on all continents, sharing best practice in cancer patient advocacy and running joint campaigns. In 2003, he co-founded the European Cancer Patient Coalition (European umbrella association connecting more than 300 cancer patient groups) and became its first full time director 2008. He left the organisation in November 2010.

Today, he is a patients’ representative in various steering committees and advisory boards, acting e.g. as member of the European Commission Expert Groups on Rare Diseases and the European Commission Expert Group on Cancer Control, as member of the ESMO Patient Advocates Work Group, the ECCO Patient Advisory Committee, the Editorial Boards of the Journal of European CME, the Journal of Cancer Policy and the Journal of Research Involvement and Engagement, the Institutional Review Board of EORTC, the scientific advisory board of the International CML Foundation, and the External Advisory Board of the University Clinic of Jena. He also acts as an independent expert for the EU Commission.

Jan’s Publications, Co-Authorships, Interviews and Blogs

Webstreams of Public Presentations

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