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