Collaboration between patients, family members, and researchers: A co-designed mixed-methods evaluation of user engagement and partnership in health research

Background: In Switzerland, involving patients, family members, and the public (users) in health research, which is also known as patient and public involvement and engagement (PPIE), 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 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.

Aim: The project aim is to learn about the user-researcher 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, we aim to develop practical guideline recommendations to aid user-researcher collaboration and PPIE in future health research.

Methods: The whole research project is structured in three work packages (WPs). In WP1, a three-round Delphi-study was performed with users and researchers to define indicators for both the process and outcomes of research co-production, including how to measure them in PPIE evaluations. In the currently ongoing WP2, the indicators will be piloted and assessed through surveys and interviews with users, study participants, researchers, clinicians, and other stakeholders involved in the FICUS study. In WP3, a workshop will be organized for users and researchers to jointly interpret the results of the PPIE indicators evaluated by the survey and interviews from WP2 and to finalize the indicators for PPIE in health research.

Output: The insights from this project are essential to identify collaboration patterns to enhance the relevance, effectiveness and implementation of health research interventions for patients and their families. The indicators for PPIE in health research in form of a guideline including practical recommendations, will be disseminated to the public and scientific community through various channels to assure a broad reach. Our evaluation will contribute to the science and practice of user involvement and engagement in implementation research within the Swiss research landscape.

The project was developed and will be co-led by the members of the FICUS patient and family advisory board and researchers. It is supported by the Seed Grant 2023 of the Citizen Science Centre Zurich.