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The SCTO is an independent organisation and is based on a joint initiative of the Swiss National Science Foundation and the Swiss Academy of Medical Sciences.

As of 2017, the SCTO is a research infrastructure of national importance funded by the State Secretariat of Education, Research and Innovation and the Swiss National Science Foundation.

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Patient and public involvement

PATIENT AND PUBLIC INVOLVEMENT (PPI) PROJECT MANAGER

Tamara Kohler
+41 31 307 10 46

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).

Sustainable implementation

One of our most important strategic objectives for the 2021–2024 funding period is to promote PPI in academic clinical research and implement it in a sustainable manner. We view compensation as one aspect of sustainability in this context, which is why we advocate for financial compensation that is based on the principles of fairness. This demonstrates that the contributions patients and the public make are valuable and appreciated.

To facilitate the compensation of patients and representatives of the public for their research contributions, we have developed a PPI remuneration policy that can be used by clinical research projects in our network. Our SCTO Remuneration Policy for Patient and Public Involvement (PPI) Activities also provides guidelines for reimbursing travel and accommodation expenditures.

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.* 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 of April 2022) are available on our “PPI mapping” page.

 

*Swiss Academy of Medical Sciences (SAMS), Swiss Personalized Health Network (SPHN), Swiss Group for Clinical Cancer Research (SAKK)

National PPI hub

This image depicts our initial thoughts on how this national PPI hub could be structured. A central element of the hub is a patient advisory panel consisting of a limited but diverse number of patient representatives. The panel’s main task is to advise the hub’s members and function as a think tank.

Guidance for researchers

PPI is also an important topic for institutions that fund clinical research projects, for example the Swiss National Science Foundation (SNSF). The SNSF includes PPI representatives in the international evaluation panel for its Investigator Initiated Clinical Trials (IICT) programme; these representatives evaluate the PPI aspects of proposed clinical trials.

Our PPI Guide for Researchers helps researchers identify opportunities to include effective and meaningful PPI in their clinical trials. We prepared this fact sheet in close collaboration with the SNSF.

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