Would you like to participate in a clinical trial? Or would you like to contribute to and shape research with your experience as a patient?

The success of clinical research in Switzerland is dependent not only on the goodwill of patients but also increasingly on their active involvement. In fact, the real experts on diseases are the patients themselves. Through their experience with a disease or condition, patients know best what matters most to them. By sharing this unique 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.
 

Patient and public involvement (PPI)

An environment characterised by mutual trust, reciprocity, and transparent communication lays the foundation for a dialogue between researchers and those affected by research. The SCTO supports this dialogue between researchers and patients and advocates for patient and public involvement (PPI) in academic clinical research. One of our most important strategic goals for the 2021–2024 funding period is to establish a centralised coordination hub and point of contact for all PPI stakeholders. This PPI hub’s activities will span organisations and diseases.

What exactly is behind the concept of patient and public involvement? How can patients and the public become more involved in clinical research? What information is available to them, so they can develop the necessary expertise? The SCTO can answer these questions for both the public and researchers and thus provide some orientation. Learn more about patient and public involvement in our PPI Fact Sheet.
 

SCTO’s contributions to PPI

The SCTO aims to support and provide a platform for people who are affected by clinical research and would like to become actively involved in it. One way the SCTO does this is by participating in EUPATI, the European Patients’ Academy on Therapeutic Innovation. The SCTO also strives to include the voice of patients and the public at events.

More information:

• SCTO's PPI Fact Sheet 
• European Patients’ Academy on Therapeutic Innovation (EUPATI)
• GET-IT Glossary with plain language definitions of health research terms