We prioritise patient and public involvement and empowerment.
The success of clinical research in Switzerland depends not only on the goodwill of patients as participants in clinical trials but also increasingly on their active involvement. Patients can offer a unique perspective on research. Through their experience with a disease or condition, patients know best what matters most to them. By sharing this specific knowledge, they can contribute to the quality, appropriateness, relevance, and credibility of clinical research. From an ethical point of view, one can argue that patients should have an influence on research that affects them, along the lines of the motto "nothing about us without us". For in the end, today’s clinical research is tomorrow’s medicine.
The SCTO is committed to implementing and fostering patient and public involvement in clinical research. As a first step, we have established a multi-stakeholder working group with the aim to identify and characterise all PPI projects/initiatives that already exist in Switzerland. The results of this mapping exercise will lay a solid basis for advancing and implementing a holistic PPI approach.
The European Patients' Academy on Therapeutic Innovation (EUPATI) provides education and training tools for representatives of patient organisations, including a one-year expert training course for patients, a patient advocate toolkit, and an online resource library. The national platform EUPATI Switzerland helps to distribute these tools and adapt them to national needs and peculiarities. It also serves as a point of contact for enquiries. The national platform EUPATI CH has existed as an association since 2016 and is led by patient representatives.
The SCTO facilitated the foundation of this national platform and hosts its secretariat. The SCTO regularly supports EUPATI CH with administrative tasks, fundraising, and project application processes. In addition, the SCTO brings together relevant Swiss stakeholders in R&D to join efforts in empowering patient representatives to actively engage in medicinal R&D processes.
Under the patronage of the SCTO and other stakeholders (defined by topic), EUPATI CH organises the annual Swiss Patient Forum. The last forum was held virtually early in 2021 on the topic of patients in a pandemic.