PATIENT AND PUBLIC INVOLVEMENT (PPI) PROJECT MANAGER
Tamara Kohler
+41 31 307 10 46
Patient and public involvement
Patient and public involvement in clinical research
A partnership based on both mutual trust and transparent communication is what forms the foundation of a dialogue between researchers and those affected by research. The SCTO promotes this dialogue and advocates for the support and implementation of patient and public involvement (PPI) in academic clinical research.
What exactly is PPI?
Patient and public involvement (PPI) in clinical research can be defined as research that is carried out with or by patients or members of the public instead of to, about, or for them. It means they are involved in a research project or initiative as equal partners, for example by:
- working with research funding organisations to prioritise proposed research projects according to their relevance for those affected by the research
- providing advice on a specific project as a member of a decision-making body
- contributing to research information materials by providing feedback on them or helping develop them.
Our PPI Fact Sheet explains where and when PPI is possible and who should be involved. We prepared this fact sheet in close collaboration with the Swiss National Science Foundation (SNSF).
Additional PPI guidance and templates as well as our SCTO Remuneration Policy for PPI Activities can be found in our PPI resources section.
What local and national PPI initiatives and projects currently exist in the field of academic clinical research?
As a first step toward answering this question, we worked together with our partner organisations (SAMS, SPHN, SAKK). Using an online survey, a multistakeholder working group identified and characterised a wide variety of PPI initiatives and projects. The results of this survey as well as information about other PPI initiatives and projects (as of October 2022) are available on our PPI mapping page.
Additional PPI-related information and links:
- Definitions of health research terms in plain language: GET-IT Glossary
- Training courses and educational tools for patients and representatives of patient organisations: European Patients' Academy on Therapeutic Innovation (EUPATI)
- Access to these tools and EUPATI’s national point of contact: EUPATI’s National Platform in Switzerland (EUPATI CH)
- Swiss patient training course by EUPATI CH (in German): Ausbildungskurs zur/zum «EUPATI Schweiz Patientenexpertin/-experten»
- University of Basel’s PPI consulting services: PPI at the Department of Clinical Research (DKF)
- PPI at the University Hospital Zurich (USZ): Patients as partners (in German)
- PPI at the University of Bern: Patient Engagement at the Department of Clinical Research (DCR) Bern
- Support for PPI in cancer research in the French-speaking part of Switzerland: Patient Lab in oncology
- PPI online course for the SNSF IICT call: How to Successfully Address the PPI Requirement
Reading and listening recommendations:
- Regulatory Affairs Watch Issue 6 (October 2021): PPI in Switzerland
- In our scientific papers section: The Role of EUPATI CH in Promoting Patient Involvement in Clinical Research: A Multi-Stakeholder Research Project
- Interview with Christiane Pauli-Magnus Swiss patient training course by EUPATI CH in the radio programme "CQFD", RTS, 27 April 2023 (in French): Une formation pour impliquer les patient.e.s dans le développement de nouvelles thérapies