EUPATI Fellows

The EUPATI Expert Training Course is an exciting and unique opportunity offering patients and patient advocates expert-level training in medicines research and development. The Course is a mixture of independent e-learning coursework and face-to-face training events over a 14-month period.

The first Course cycle kicked off in October 2014 and ran until December 2015. The second course started in September 2015 and ended in November 2016. The third expert patient course ended in December 2018. The fourth course has just started and will run untilearly 2021.

More than 150 expert patients have been trained so far and 8 were from Switzerland and portrayed below.

Cohort 5 - Swiss Fellows

Rosine Mucklow

Rosine Mucklow is the owner and founder of Buxtorf Quality Services (BQS) GmbH, a small and independent consultancy offering services related to quality in clinical research and development, with an emphasis on patient compliance. After obtaining her Masters degree in Science, Rosine began her career in the pharmaceutical industry, successfully leading clinical trials through various development phases, before shifting focus from operational management to quality management in the academic setting.

Rosine is a long-term member and Executive Board member of EUPATI Switzerland, as well as a EUPATI Fellow. Following a long family history of breast cancer, Rosine herself was diagnosed in 2014. Rosine is also a caregiver to her mother, who suffered of a cerebral haemorrhage but luckily did not require surgery, but still requires care.

She has since become a passionate spokesperson for both current and future patients, by actively promoting the importance of patient compliance in Clinical Research & Development through patient engagement. Rosine engaged in several initiatives, projects as patient providing her insight to the studies, e.g. reviewing study protocols for the OPBC (Oncoplastic Breast Consortium) and other at the Department Klinischer Forschung (DKF) of the University Hospital Basel and Universitäts-Kinderspital Beider Basel (UKBB). Rosine was a atient champion at the DayOne Health Hack (2021).

Steven Bourke

Steven (Steve) Bourke is co-founder of RheumaCura Foundation, CEO of PersonalPulse GmbH and core team member of the Institute for Human Centered Health Innovation (IHCHI). His passion is in Empowering People who are Patients. Steve is extremely active in the digital health innovation space. A co-creator of the DayOne Health Hack, Europe’s largest patient-centred hackathon, and expert panel member of the NTN innovation forum. A coordinator of the patient advisory group for the IMI PharmaLedger multistakeholder project with the European Patient Forum. He has actively brought the voice of patients into several digital initiatives and moved them from testers to co-creators.

Steve has held global patient-facing roles in both Roche and BioMarin and at Novartis for a decade in advanced imaging and microscopy. He has also developed and co-created initiatives with Global Skin and is an active mentor to many patient groups across Europe and the US. To bring evidence-based research to the inclusion of people who are patients in eHealth development, he teamed up with research partner Christine Jacob of the Fachhochschule Nordwestschweiz FHNW to develop a blueprint for the inclusion of patients at all stages in human-centred design InnoSuisse funded this research.

Steve holds a BSc in Exercise Physiology from the University of South Wales, a master’s by research in molecular respiratory physiology (MPhil) from Cardiff University, and a master’s of Science in Health Communications (MSc) from Boston University.

Caridad Rodriguez

Caridad Rodriguez is a biologist passionate about the inclusion of patient perspective during the drug development process and associated evidence generation.

She is a EUPATI Fellow and holds a MSc in Biological Sciences from the University of Granada in Spain. She started her professional career as a science teacher. After working for a Contract Research Organisation (CRO), she moved to the pharmaceutical industry about 10 years ago where she has held different clinical operations roles across all phases of clinical research and development. She has a broad experience in implementing clinical systems and innovative solutions in support of clinical trials, process design and improvements, as well as customer relationship management. She has been leading teams and change initiatives through implementation in global and cross-functional (matrix) environments.

Caridad believes that patient engagement is crucial to better clinical outcomes and the well-being of the healthcare ecosystem. Patient empowerment starts with education and EUPATI is a game-changer for empowering patients worldwide.

Chantal Britt

Chantal Britt is co-founder of the patient organisation Long Covid Switzerland and represents the interests of patients with postinfectious diseases in several public and private organisations, working groups and participatory projects. Chantal originally holds a Master’s degree in translation from the University of Geneva (1996) and has been working for 15 years as a journalist and over 10 years as communications specialist in private and public scientific organisations.

Since becoming chronically sick with long covid in March 2020, Chantal has worked in various roles to advance Patient and Public Involvement (PPI) in Switzerland. As a patient representative she is a member of several expert panels on long covid, acts as PPI representative for the assessment of clinical research projects for the Swiss National Science Foundation (SNSF) and the Swiss Personalized Health Network (SPHN) and is herself actively involved in citizen science and other participatory projects. Since September 2022, Chantal works as scientific collaborator at the Competence Centre for Participatory Healthcare at the Bern University of Applied Sciences.

Rosmarie Pfau

Rosmarie Pfau is the founder and president of Lymphome.ch Patientennetz Schweiz and a lymphoma survivor.

Since 2001 she is the contact person for lymphoma and CLL-patients in Switzerland. She is facilitator of four regional patient support groups. Her focus is increasing the understanding of lymphomas and helping to improve the availability and production of objective, reliable and patient-friendly information and to raise awareness about the disease.

Rosmarie is also committed as Vice president of the international Lymphoma Coalition, member of the SAKK Patient Advisory Board, member of the SWISSMEDIC Working Group for Patient- and Consumer Organisation and founding- and board member of the Swiss umbrella organisation HOPOS.

Rosmarie is active as a patient representative in the National Platform EUPATI CH executive board and is a trained Fellow of the European Patients’ Academy on Therapeutic Innovation (EUPATI).

“EUPATI made a big change in my life. I learned how important the patient involvement in all parts of the process is and to enter the patient’s experience into the engagement with other stakeholders.”

Florian Klett

Florian Klett became EUPATI Fellow with the 2nd cohort and coordinated the EUPATI Alumni network for 14 months until September 2018. On a national level, he was member of the Advisory Committee of EUPATI CH and is now ready again to partake in more projects and activities.

Flo is a carer and family member of a person living with Alzheimer and various co-morbidities, including Rheumatic and Musculoskeletal Diseases (RMDs) and COPD. He experienced a gradual but severe loss of functions himself due to Guillain-Barré syndrome, an autoimmune disorder that affects the nerves in 2018, but fully recovered from it.
He strongly believes that through generating mutual understanding, trust develops, and then real communication and exchange starts to take place. By building bridges and enabling everyone to learn from each other there is a benefit in it for all of us.
Presently he works as freelancer consultant in the areas of facilitating patient engagement and for medical conferences as well as events in general.

Hansruedi Völkle

Dr Hansruedi Völkle (Positivrat), has been our EUPATI CH President from 2016 – 2020, and through this training, he is switching from being a teacher of students, to a student himself.
Hansruedi originally studied physics and radiation protection, obtained his PhD, and became Professeur Titulaire at Fribourg University. He then worked for many years at the Swiss Federal Office of Public Health in the domain of environmental radioactivity and radiation protection. He was a longstanding member of the the board of Swiss Aids Federation (Aids-Hilfe Schweiz) and ran as its president from 2008 to 2011, as well as being member of the Swiss Federal AIDS Commission. He is currently member of the Positive Council Switzerland (Positivrat) and has been our EUPATI CH President since 2016.
In February, for his training, Hansruedi met 53 fellow participants from 27 European countries, with their teachers and monitors in Madrid.

“The three-day meeting was intense and motivating, but demanding. It was well-structured and balanced between teaching and interactive working. The cultural and linguistic diversity of Europe and the way we are able to cooperate, notwithstanding, is amazing.”

Malena Vetterli

Malena Vetterli, founder and president of FMF & AID Global Association: Familial Mediterranean Fever and Autoinflammatory Diseases, established in Zurich in 2017. The association has been elected into the European Reference Networks (ERN) Patient Advocacy Group, to actively represent patients. Malena is also a member of the Novartis Autoinflammatory Council and has been asked to represent the patient voice at EULAR and in an EU financed project.

About the training course, Malena commented: “The few gaps I had are being well addressed through the EUPATI course. After completing this course, I will be a recognised patient expert. What’s more, I expect to be much more actively involved in determining the course of future research into medicines for Familial Mediterranean Fever and other auto-inflammatory diseases.”

Like many patient representatives, Malena faced numerous obstacles and mounting difficulties seeking diagnosis and treatment, when her son developed serious health issues. Since there was little information or help available, Malena turned to the internet and social media in search of answers and there she found many patients and carers in a similar situation. In 2011, she heard for the first time about FMF and AID, causing inflammation of the internal organs. Having finally found a name for her son’s condition, she reached out to connect with many other patients.

Nicole Gusset

Dr Nicole Gusset is president of the European umbrella patient organisation SMA Europe. She is founder and president of SMA Schweiz and president of the Swiss Neuromuscular Society. Her other mandates include among others member of the Board at FSRMM, member of the Swissmedic patient working group, member of the SCTO PPI working group. Nicole also contributes to various other initiatives in the area of patient advocacy.

Nicole’s main goals are to promote patient involvement and to be recognized as a trusted partner by all stakeholders, including regulators, payers, pharmaceutical companies, clinicians, researchers, and other patient groups. Nicole advocates for evidence-based patient advocacy and wants community needs to be systematically assessed. This is to ensure that 1) patient-relevant research is conducted, 2) the best possible medicines and care are developed for patients, and 3) access to diagnosis, optimal treatment, and care for patients is accelerated and improved. Beyond that, Nicole is fascinated by the opportunities behind the crucible of “innovation” – the interplay of medical progress, digitization, Big Data and robotics – and she wants to be there when some of them come to life.

Nicole earned her PhD in Behavioral Ecology in Berlin, Germany, and in the Serengeti, Tanzania. She then worked for several years at the Swiss Federal Veterinary Office as a research associate and deputy head of the unit dealing with bilateral agreements with the European Union. Currently, Nicole is a senior scientific programme manager at the University of Zurich.

Max Lippuner

Max Lippuner, founder and president of Europa Uomo Switzerland (EUS, umbrella organisation for men’s cancer, in particular prostate, testicles, bladder and urethra cancer) is a prostate cancer patient since 2007. In 2011 he was elected as the president of the Swiss Patient-Coalition, founded by the cancer league. He is very interested in the Swiss health system, patient advocacy, patient involvement and the patient’s voice of Switzerland.

Diagnosed at the age of 59 with a highly malignant prostate tumor he was treated with a full radiation and enjoyed 10 years of free progress. In 2017 he experienced a recurrence and after the new radiotherapy he is now in good hope of many more years of good health and cancer free times to come.

Max is an engineer in printing and industrial-processes by education and had a very specific career. He worked in the printing industry from the work preparation over machine sales to paper sales and advertising. He run printshops, a database for marketable securities in banks and at the end of his career, was running a renovation firm. Now, in his free time, he works as church voluntary and in social engagement to support patients.

As president of EUS he engages in public awareness about the risks, early detection and treatment of men’s cancer and promotes specific prostate-cancer rehabilitation in Switzerland. The main goal of EUS is prevention, early detection, dealing with cancer and social insurance and minimising surgery risk. EUS is financially supporting patient self-help groups in Switzerland that provide medical and administrative education in Germany and advertising for Uomo-Café as a low level possibility to inform men and women.

“The EUPATI Patient expert training gave me a huge basic education for my work in patient-advocacy and as a patient advocate. I understand now how the R&D processes of the Swiss health system are working as well as what is done on the European level”.

Lancierung der ersten Schweizer Patientenschulung von EUPATI CH

Ausbildungskurs zur/zum «EUPATI Schweiz Patientenexpertin/-experten»

Patientenbeteiligung in der medizinischen Forschung

EUPATI CH freut sich, Ihnen in Zusammenarbeit mit der Abteilung für klinische Forschung des Universitätsspitals Basel eine auf schweizerische Verhältnisse zugeschnittene Fortbildung in Landessprache anbieten zu können. Der Kurs fokussiert auf die klinische Forschung in der Schweiz und befähigt die Teilnehmenden, sich sinnvoll im Bereich der klinischen Forschung zu engagieren. Die Kursbeschreibung und weitere Details finden Sie in dem Flyer.

Weitere Informationen und Anmeldung auf der Webseite.

Swiss patient engagement stakeholder analysis hot off the press!!

We are happy to share our publication on the “The Role of EUPATI CH in Promoting Patient Involvement in Clinical Research: A Multi-Stakeholder Research Project” just out in Frontiers in Medicine. We identified some of the difficulties in promoting PI in medicines R&D in Switzerland, in particular the complex collaboration among stakeholders and a lack of funds, human resources, and knowledge. To respond to these difficulties, EUPATI CH has begun preparing a basic training course for patients that is adapted to Switzerland.

Sessa C, Schmid C, Tolotti A, Magnin A, Haerry D, Bonetti L and Klingmann I (2021). The Role of EUPATI CH in Promoting Patient Involvement in Clinical Research: A Multi-Stakeholder Research Project. Front. Med. 8:795659. doi: 10.3389/fmed.2021.795659

EUPATI Fellows

Lancierung der ersten Schweizer Patientenschulung von EUPATI CH

Ausbildungskurs zur/zum «EUPATI Schweiz Patientenexpertin/-experten»

Swiss patient engagement stakeholder analysis hot off the press!!

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