FICUS PPI Evaluation

The involvement of individuals with personal experience of health or illness in research projects – also known as Patient and Public Involvement and Engagement (PPIE) – is gaining increasing importance in Switzerland. However, how such collaboration can be practically shaped, what participants experience, and what defines a successful partnership remains under-researched.

As part of the FICUS study, the project explores how patients, family members, and researchers can work together effectively over the course of a research project. The goal is to gain insights into how such partnerships can be successful, appreciative, respectful, and genuinely collaborative.

To achieve this, a mixed-methods evaluation was developed jointly by the FICUS Advisory Board of People with Lived Experience and the research team. This evaluation is currently underway.

In the first step, a workshop was held with individuals with lived experience and researchers to define indicators of successful collaboration. These refined indicators were then collected using surveys and interviews with people affected, study participants, researchers, healthcare professionals such as nurses and physicians, and other individuals involved in the FICUS study. In a second workshop, the results will be jointly interpreted by people with lived experience and researchers, and recommendations will be formulated for effective collaboration in health research.

The findings aim to improve the relevance and impact of health research for patients and families. The project is developed and led by the FICUS Advisory Board and the FICUS research team. It is funded by a Seed Grant from Citizen Science Zurich and runs from September 2023 to February 2026.