PPIE 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 explored how patients, family members, and researchers can work together effectively over the course of a research project. The goal was 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 has now been completed.

In the first step, a workshop was held with individuals with lived experience and researchers to define indicators of successful collaboration. This resulted in 35 potential indicators, which were further refined by a small group of people with lived experience and researchers.  These refined indicators were then assessed for relevance, clarity and completeness in two surveys among people with lived experience and researchers. The result is a set of 30 quality indicators covering the structures, processes and outcomes of collaboration. They reflect the perspectives of both patient and family research partners and researchers and can be used to plan and evaluate collaboration in research projects. As a next step, the indicators should be tested and validated in practice.

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