Developing and testing guidance to support researchers engaging patient partners in health-related research

Although interest in Patient and Public Involvement in health-related research is growing, there seems to be a lack of guidance supporting researchers in deciding on methods and levels for Patient and Public Involvement in health-related research throughout the research process. Furthermore, the numerous definitions, methods, and frameworks make it challenging for researchers new to this field to decide on the most appropriate approach for their project.

This study aimed to develop and test guidance for researchers deciding on approaches, levels, and methods for engaging patient partners in health-related research. A group of 11 researchers in Patient and Public Involvement in health-related research participated in six workshops to develop the guidance. The feasibility and acceptability of the guidance were tested in a survey of 14 researchers using the System Usability Scale plus two elaborative questions. The guidance was also tested by five PhD students engaging patient partners in their projects.

The guidance developed consisted of two resources: Resource I outlined five international approaches to Patient and Public Involvement in health-related research, and Resource II described the different levels and methods for engaging patient partners in research. The System Usability Scale score (at the 50th percentile) was 80, indicating excellent usability. Qualitative data showed that the two resources supported reflections regarding different approaches, levels, and methods.

The researchers found the guidance to be supportive of their reflective thinking about engaging patient partners in their research. The testing provided knowledge about when and how to use the guidance but also raised questions about the usefulness of the guidance in communications with patients.