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Citizen Science Zurich

  • Photo from Kraken Images / unsplash

Collaboration between patients, family members, and researchers

A co-designed mixed-methods evaluation of user engagement and partnership in health research


In Switzerland, involving patients, family members, and the public (users) in health research, which is also known as patient and public involvement (PPI), is becoming more common. However, evaluating how users and researchers collaborate within research studies itself has not yet received much attention. This project is part of the FICUS study (Family Support Intervention in Intensive Care Units), which is funded by the Swiss National Science Foundation, and investigates the ability of a family support program in intensive care units to increase quality of care, strengthen family coping with serious illness and trauma, and reduce negative impact on family members’ mental health.

About the project

The goal is to learn about the collaboration experience within the FICUS study. To achieve this, a mixed-methods evaluation will be co-designed and co-conducted to examine the impact and experience of the user-researcher collaboration from both their perspectives. In addition, the team aims to develop practical recommendations to aid user-researcher collaboration and PPI in future health research.

The insights from this project are essential to identify collaboration patterns to enhance the relevance and effectiveness of health research for patients and their families.

Invovlvement of citizen scientists

First, we will run a workshop with users and researchers to define indicators for both the process and the outcomes of research co-production, including how to measure them in PPI evaluations. These indicators will be assessed through surveys and interviews with users, study participants, researchers, clinicians, and other stakeholders involved in the FICUS study. A second workshop will then be held to jointly interpret the results and formulate recommendations. Finally, recommendations for user-research collaboration in complex health intervention research will be created.

Weiterführende Informationen


Judith Safford
Swiss Clinical Quality Management in Rheumatic Diseases

Rahel Naef
Institute for Implementation Science in Health Care
University of Zurich

More information

The project was developed and will be co-led by the members of the FICUS patient and family advisory board and researchers.

Institute for Implementation Science in Health Care: FICUS Trial
SCTO: PPI-Mapping

Institute for Implementation Science in Health Care, University of Zurich

RheumaCura Foundation