swissethics: Building trust and including patients’ perspectives in the human research process

Abstract

It has been widely proven that involving patients and laypeople throughout the entire human research process provides added value for human research in general, for patients in their everyday lives, and therefore for society as a whole. Public and patient involvement (PPI) is possible at the very early stages of research when defining objectives and planning a study, when a study is conducted, and when study results are published. PPI means that patients are treated as active research partners rather than just passive research subjects. This article discusses how swissethics promotes transparency in order to lay the foundation of trust needed for PPI and provides examples of PPI for the regulatory and ethical aspects of human research.