Jan Geissler

Patient Advocate and Social Entrepreneur

• Founder and CEO, Patvocates, Germany
• Managing Director of European Patient Advocacy Institute, Germany
• Co-Founder and Steering Committee Member, CML Advocates Network
• Vice President Leukemia Patient Advocates Foundation, Switzerland
• Chair, LeukaNET e.V., Germany
• Past Chair, WECAN - Workgroup of European Cancer Patient Advocacy Networks
• Former director EUPATI (EU)

Jan Geissler is founder and CEO of Patvocates, a think tank, consultancy and social enterprise on patient advocacy and patient engagement in research. From 2012-2017, he has been working for the European Patients' Forum as the Director of the European Patients Academy (EUPATI), a project funded by the Innovative Medicines Initiative (IMI). EUPATI has developed educational material and training courses to educate patient and patient advocates about medicines development processes. In the one of Europe's largest "Big Data" projects, the IMI-funded EU projects HARMONY and HARMONY-PLUS, he is co-leading the work package on 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, Jan decided to leave the telecommunications and media business 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 128 leukaemia patient groups in 93 countries on all continents. In 2003, he co-founded the European Cancer Patient Coalition and acted as its first full time Director 2008-2010. In 2016, he co-founded the Acute Leukemia Advocates Network (ALAN). He also co-founded the Workgroup of European Cancer Patient Advocacy Networks (WECAN) and is currently chairing it.

Jan is a patients' representative in various steering committees and advisory boards, acting e.g. as member of the European Cancer Organisation's Patient Advisory Committee, the scientific advisory board of the International CML Foundation, the strategy group of the the German National Decade Against Cancer and the board of Patient Focused Medicines Development (PFMD).  He also acts as an independent expert in committees and panels of the EU Commission. He is also member of the Ethics Committee of the Bavarian Chamber of Physicians. In 2016, he was awarded with the Order of Merit of the Federal Republic of Germany for his work as a patient advocate.

Publications

ORCID: 0000-0001-9058-5097

2023:

• Adopting recommendations for implementing patient involvement in cancer research: a funder’s approach. Costa Alencar, A.B., Selig, W.K.D., Geissler, J. et al. . in: Res Involv Engagem (2023). doi: 10.1186/s40900-023-00410-z
• Understanding quality of life in patients with acute leukemia, a global survey. Pemberton-Whiteley, Nier, Geissler, Wintrich, Verhoeven, Christensen, Salek, Oliva, Ionova, Bradley, in: Patient Cent Res Rev. 2023;10:21-30. doi: 10.17294/2330-0698.1951

2022:

• Veränderungen durch die neue EU-Verordnung 536/2014 zu klinischen Prüfungen aus Patientensicht. Klingmann, Paul, Bereczky, Plate, Breithaupt-Grögler, Schindler, Geissler, in: Bundesgesundheitsbl (14 Dec 2022), DOI: 10.1007/s00103-022-03635-7
• Pan-Stakeholder Core Outcome Set (COS) Definition for Hematological Malignancies within the Framework of Harmony and Harmony PLUS Projects. Lang, Bereczky, Geissler et al, in: Blood (2022) 140 (Supplement 1): 5285–5287, DOI: 10.1182/blood-2022-157549
• European Groundshot—addressing Europe's cancer research challenges: a Lancet Oncology Commission. Lawler, Davies, Oberst, Oliver (...) Geissler et al, in: Lancet Oncology Commission (2022), DOI: 10.1016/S1470-2045(22)00540-X
• An Approach to Solving the Complex Clinicogenomic Data Landscape in Precision Oncology: Learnings From the Design of WAYFIND-R, a Global Precision Oncology Registry. Le Tourneau, Perret, Hackshaw, Blay, Nabholz, Geissler, Do, von Meyenn, Dienstmann, in: JCO Precis Oncol (2022), DOI: 10.1200/PO.22.00019
• Patientenbedürfnisse müssen eine zentrale Rolle spielen. Interview mit Prof. Diana Lüftner und Jan Geissler über die Bedürfnisse der Patienten, deren Einbeziehung in wissenschaftliche Projekte, Fortschritte in der Digitalisierung und die Bedeutung von Informationen, in: FAZ Zukunft Gesundheitswesen, 16 Jun 2022
• Building a HARMONY Added Value Framework for Hematologic Malignancies: A Comparative Analysis of Existing Tools. Cerisoli, Ali, Bereczky, Bolaños, Bullinger, Dhanasiri, Gallagher, García Pérez, Geissler, Guillevic, Harrison, Naoum Portulano, Rodríguez, Schulze-Rath, Gómez Sanz, Hernández Rivas, in: Value in Health (2022), DOI: 10.1016/j.jval.2022.04.1729
• Reaching beyond maximum grade: progress and future directions for modernising the assessment and reporting of adverse events in haematological malignancies. Thanarajasingam, Minasian, Bhatnagar, Cavalli, Angelo De Claro, Dueck, El-Galaly, Neil Everest, Geissler, Gisselbrecht, Gormley, Gribben, Horowitz, Ivy, Jacobson, Keating, Kluetz, Kwong, Little, Matasar, Mateos, McCullough, Miller, Mohty, Moreau, Morton, Nagai, Nar, Nastoupil, Robertson, Sidana, Smdby, Soneveld, Tzogani, von Leeuwe, Velikova, Vlla, Wingard, Seymour, Habermann, in: Lancet Hematology (2022), DOI: 10.1016/S2352-3026(22)00045-X
• Improving outcomes through patient-generated evidence - the next step in patient advocacy. Geissler, Huber (2022), in: The Lancet Haematology, doi 10.1016/S2352-3026(22)00131-4
• Delivering precision oncology to patients with cancer. Mateo, Steuten, Aftimos, André, Davies, Garralda, Geissler, Husereau, Martinez-Lopez, Normanno, S. Reis-Filho, Stefani, Thomas, Westphalen, Voest, in: Nature Medicine volume 28, pages 658–665 (2022), DOI: 10.1038/s41591-022-01717-2
• Das Potenzial digitaler Entscheidungshilfen und großer Datensätze für Patienten und Forschung. Geißler, Huber, in: Nationale Arena für digitale Medizin - Wandel. Werte. Wege. Leyck Dieken (Hrsg.), Medizinisch Wissenschaftliche Verlagsgesellschaft (2022), ISBN: 978-3-95466-667-6

2021:

• Principles of Successful Patient Engagement in Cancer Research. Authored by the German Federal Ministry of Education and Research in the framework of the Trio Presidency of the European Council (Germany, Portugal and Slovenia) with over 130 contributors from 16 countries across Europe. Published in in September 2021
• "It's easier when you know how..." A publications training course co-created by patient advocates and publication professionals. Woolley, Geissler, Bereczky, Bougheye, Pemberton-Whiteley Gegenyg, Lobban, in: Curr Med Res Opin 2021;27(Suppl 1):14., doi: 10.6084/m9.figshare.16768882.v1
• The European Code of Cancer Practice. Lawler, Oliver, Gijssels, Aapro, Abolina, Albreht, Erdem, Geissler, Jassem, Karjalain, Vecchia, Lievensk, Meunier, Morrissey, Naredim, Oberst, Poortmanso, Price, Selby et al, in: Journal of Cancer Policy (2021), doi: 10.1016/j.jcpo.2021.100282
• Recommendations on patient involvement for funding institutions. Geissler, Haerry, Bereczky, Alencar. Rising Tide Foundation and Patvocates (2021)
• Recommendations on patient involvement for applicants of collaborative research grants. Geissler, Haerry, Bereczky, Alencar. Rising Tide Foundation and Patvocates (2021)
• Recommendations for patient organizations and patient advocates on participation in collaborative research projects. Geissler, Haerry, Bereczky, Alencar. Rising Tide Foundation and Patvocates (2021)
• Gesundheitskompetenz und Patientenpartizipation in Deutschland und der EU. Geissler, Huber, in: Patienten und Fachgesellschaften: Zusätzliche Expertise fürs AMNOG. Interdisziplinäre Plattform zur Nutzenbewertung, Ausgabe 13 (Sept 2021), ISBN 2364-916X.
• Patientenbeteiligung als Investment für eine effizientere Forschung und Entwicklung neuer Arzneimittel.  Geissler, Huber, in: PM QM 3/2021 by DGPharMed and German Quality Management Association e.V.
• Gemeinsam Forschen gegen Krebs. Geissler, in: Zukunft der Krebsmedizin 2021, Frankfurter Allgemeine Zeitung (23. Juni 2021).

2020:

• Investigating the Quality of Life of Patients with Acute Leukemia, with a Focus on Age and Patient-Reported Experience. Pemberton-Whiteley, Bier, Geissler, Wintrich, Verhoeven, Christensen et al, in: Blood (2020) 136 (Supplement 1), doi: 10.1182/blood-2020-141293
• Cross-Border Access to Clinical Trials in the EU: Exploratory Study on Needs and Reality. Lalova, Padeanu, Negrouk, Lacombe, Geissler, Klingmann, Huys, in: Frontiers in Medicine (2020), doi: 10.3389/fmed.2020.585722
• Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs. Sharf, Marin, Bradley, Pemberton-Whiteley, Bombaci, Christensen, Gouimi, Deekes, Daban, Geissler, in: Leukemia (2020), doi: 10.1038/s41375-020-0867-0
• Core outcome set measurement for future clinical trials in acute myeloid leukemia: the HARMONY study protocol using a multi-stakeholder consensus-based Delphi process and a final consensus meeting. Lang, Harrison, Williamson, Ossekoppele, Geissler, Berezczky et al, in: Trials (2020), doi: 10.1186/s13063-020-04384-1

2019:

• Including the patient voice in the development and implementation of patient-reported outcomes in cancer clinical trials. Addario, Geissler, Horn, Krebs, Maskens, Oliver, Plate, Schwartz, Willmarth, in: Health Expectations (2019), doi: 10.1111/hex.12997
• CML Patients' Views on Psychological Support throughout the Treatment-Free Remission Journey. Sharf, Hochhaus, Geissler, Marin, Pemberton-Whiteley, Bombaci, Christensen, Gouimi, Daban, Deekes, Bradley, in:  Blood (2019) 134 (Supplement_1): 2934, doi: 10.1182/blood-2019-123942
• Identifying Differences in the Quality of Life of Patients with Acute Leukemia: A Global Survey. Pemberton-Whiteley, Oliva, Geissler et al, in: Blood (2019) 134 (Supplement_1): 4785, doi: 10.1182/blood-2019-128818
• Randomized, Open-Label, Multicenter, Phase 2 Study of Asciminib (ABL001) As an Add-on to Imatinib Versus Continued Imatinib Versus Switch to Nilotinib in Patients with Chronic Myeloid Leukemia in Chronic Phase Who Have Not Achieved a Deep Molecular Response with Frontline Imatinib. Saglio, Hughes, Geissler, Kapoor, Longin, Mukherjee, Cortes, in: Blood (2019) 134 (Supplement_1): 5910, doi: 10.1182/blood-2019-124702

2018:

• Beyond maximum grade: modernising the assessment and reporting of adverse events in haematological malignancies. Thanarajasingam, Minasian, Baron, Cavalli, De Claro, Dueck, El-Galaly, Everest, Geissler et al, in: Lancet Haematology (2018), doi: 10.1016/S2352-3026(18)30051-6
• What do stakeholders expect from patient engagement: Are these expectations being met? Boudes, Robinson, Bertelsen, Brooke, Hoos, Boutin, Geissler, Sargeant, in: Health Expectations (2018), doi: 10.1111/hex.12797
• Role of Patient Organisations. Bedlington, Geissler, Houyez, Lightbourne, Maskens, Strammiello, in: Patient Involvement in Health Technology Assessment. Facey, Ploug Hansen, Single (Ed.) (2017), doi: 10.1007/978-981-10-4068-9
• Asciminib (ABL001) in Combination with Imatinib in Patients with Chronic Myeloid Leukemia in Chronic Phase Who Have Not Achieved a Deep Molecular Response with Long-Term Frontline Imatinib: A Randomized, Open-Label, Multicenter, Phase 2 Study. Cortes, Hughes, Geissler, Hois et al, in: Clinical Lymphoma, Myeloma and Leukemia (2018), doi: 10.1016/j.clml.2018.07.093

2017:

• Improving Patient Involvement in Medicines Research and Development: A Practical Roadmap. Geissler, Ryll, Leto, Uhlenhopp, Therapeutic Innovation & Regulatory Science (2017), doi: 10.1177/2168479017706405
• Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries. Geissler, Sharf, Bombaci, Daban, de Jong, Gavin, Pelouchova, Dziwinksi, Hasford, Hoffmann, Journal of Cancer Research and Clinical Oncology (2017), DOI: 10.1007/s00432-017-2372-z
• Culture and Process Change as a Priority for Patient Engagement in Medicines Development. Boutin, Dewulf, Hoos, Geissler, Todaro, Schneider et al, in: Ther Innov Regul Sci (2017), doi: 10.1177/2168479016659104.

2016:

• Chronic myeloid leukemia patients call for quality and consistency when generics are introduced to treat their cancer; J Geissler, G Sharf, J Cugurovic, R Padua, Š Narbutas, M Remic, V Venkatesh; Leukemia (2016); doi: 10.1038/leu.2016.220
• The European Hematology Association Roadmap for European Hematology Research: a consensus document. Engert, Balduini, Brand, Coiffier et al, in: Hematologica (2016), doi: 10.3324/haematol.2015.136739
• The European Cancer Patient's Bill of Rights, update and implementation 2016, Højgaard, Löwenberg, Selby et al,  in: ESMO Open (2016), doi: 10.1136/esmoopen-2016-000127

2015:

• Biobanking from the patient perspective, D Mitchell, J. Geissler, A Parry-Jones, H Keulen, D Schmitt, R Vavassori, B Matharoo-Ball., Research Involvolvement and Engagement (2015) 1: 4. https://doi.org/10.1186/s40900-015-0001-z
• Mobile Health Global Interview with Jan Geissler, 29 Sept 2015
• EUPATI: Collaborating between patients, academia and industry to champion the informed patient in medicines research and development, Daphnee Pushparajah, Jan Geissler, Niels Westergaard, in: Journal of Medicines Development Science (July 2015), DOI: 10.18063/JMDS.2015.01.011
• Partnering With Patients in the Development and Lifecycle of Medicines: A Call for Action, Anton Hoos, James Anderson, Marc Boutin, Lode Dewulf, Jan Geissler, Graeme Johnston, Angelika Joos, Marilyn Metcalf, in: Therapeutic Innovation & Regulatory Science (April 2015), DOI: 10.1177/2168479015580384
• Training on trials: Patients taught the language of drug development, Shraddha Chakradhar, Nature Medicine (5 March 2015), doi:10.1038/nm0315-209, with Interview of Jan Geissler
• Patienten brauchen Sicherheit, aber auch Fortschritt - Die neue EU-Verordnung zu klinischen Arzneimittelprüfungen, Jan Geißler, FORUM 2015, 30:29–32, DOI 10.1007/s12312-015-1266-8, Springer, February 2015

2014:

• ePatients: Changing healthcare with technology, Interview on Mobile Health Global, 27 November 2014
• Patients as partners in medicines development – the EUPATI project, Interview of an Geissler in Pharmaforum blog, 14 Oct 2014
• Integrating cancer patients' perspectives into treatment decisions and treatment evaluation using patient-reported outcomes--a concept paper. Huebner, Rosé, Geissler, Gleiter, Muenstedt, Micke, Buentzel, Bottomley, Hofheinz, in: Eur J Cancer Care (2014), doi: 10.1111/ecc.12095
• Molekular zielgerichtete Therapie der chronischen myeloischen Leukämie (CML), Prof. Dr. Tim H. Brümmendorf und Prof. Dr. Steffen Koschmieder (Hrsg.), Jan Geissler (Co-Autor), UNI-MED, 1. Auflage 2014, 140 Seiten, Hardcover, ISBN 978-3-8374-2269-6
• A Catalyst for Change: The European Cancer Patient's Bill of Rights. Lawler, Le Chevalier, Murphy, Banks, ..., Geissler et al, in: Oncologist (2014), doi: 10.1634/theoncologist.2013-0452
• Der Patient als Partner, Jan Geissler, Jahrbuch Healthcare Marketing 2014 zu "Patient, Verbraucher, Kunden – bestimmen die Nutzer den Gesundheitsmarkt?"

2013:

• Survey on the worldwide CML Advocates Network regarding complementary and alternative medicine, Journal of Cancer Research and Clinical Oncology, T Elsner, J Geissler, J Huebner, J Cancer Res Clin Oncol, March 2013, DOI 10.1007/s00432-013-1414-4
• Factors Predicting Intentional Non-Adherence In Chronic Myeloid Leukemia: A Multivariate Analysis On 2546 Patients By The CML Advocates Network. Geissler, Efficace, Bombaci, de Jong, Gavin, Dziwiński, Daban, Pelouchová, Cottone, Guilhot, Sharf, in: Blood (2013), doi: 10.1182/blood.V122.21.4023.4023
• Quality of Life in hematology: European Hematology Association theme of the year ... and years to come. Chomienne, Guenova, Hagenbeek, Lacombe, McCann, Salek, Geissler, van der Beek, in: Haematologica (2013), doi: 10.3324/haematol.2012.080796.

2012:

• Adherence in Chronic Myeloid Leukemia: Results of a Patient-driven Pilot Survey, Jan Geissler, Giora Sharf. in: Journal For Patient Compliance, Vol 2 Issue 4 (2012)
• Psycho-oncology and Advocacy in Cancer Care: An International Perspective, Luzia Travado, Jan Geissler, Kim Thiboldeaux, Jeff Dunn, Ranjit Kaur, and Anne Merriman. in: Clinical Psycho-Oncology: An International Perspective, Luigi Grassi, Michelle Riba, Wiley (2012), DOI: 10.1002/9781119941101

2011:

• Delivering affordable cancer care in high-income countries. Sullivan, Pepperkorn, Sikora, ... Geissler et al, in: The Lancet Oncology Commission (2011), doi: 10.1016/S1470-2045(11)70141-3
• Meet e-patient Jan - Whydot Blog Interview, 1 August 2011
• Survivorship: more than just being (a) patient (European Oncology Nursing Society Newsletter, Summer 2011 edition, pp. 25-27)

2010:

• Information to Patients Debate 2010 – as if the Internet was still a walled garden, Rare Disease Blogs April 2010
• The Burden of Rare Cancers in Europe - Gatta G et al, in: Advances in Experimental Medicine and Biology (2010),  doi: 10.1007/978-90-481-9485-8_17
• Informierte Einwilligung in klinischen Studien (Informed Consent in Clinical Trials (German), German Cancer Society's FORUM magazine 3/2010
• We, the patients - CancerWorld Magazine, January 2010 (PDF)