A blueprint for patient and public involvement in the development of a reporting guideline for systematic reviews of outcome measurement instruments: PRISMA-COSMIN for OMIs 2024

In recent years, projects to develop reporting guidelines have attempted to integrate the perspectives of patients and public members. Best practices for patient and public involvement (PPI) in such projects have not yet been established. We recently developed an extension of PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), to be used for systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) for OMIs 2024. Patients and public members formed a small but impactful stakeholder group. We critically evaluated the PPI component in this project and developed recommendations for conducting PPI when developing reporting guidelines. A patient partner was an integral research team member at the project development and grant application stage. Once the project started, five patient and public contributors (PPCs) were recruited to participate in the Delphi study; three PPCs contributed to subsequent steps. We collected quantitative feedback through surveys; qualitative feedback was garnered through a focus group discussion after the Delphi study and through debrief meetings after subsequent project activities. Feedback was thematically combined with reflections from the research team, and was predominantly positive. The following themes emerged: importance of PPI partnership, number of PPCs involved, onboarding, design of Delphi surveys, flexibility in the process, complexity of PPI in methodological research, and power imbalances. Impacts of PPI on the content and presentation of the reporting guideline were evident, and reciprocal learning between PPCs and the research team occurred throughout the project. Lessons learned were translated into 17 recommendations for future projects. Integrating PPI in the development of PRISMA-COSMIN for OMIs 2024 was feasible and considered valuable by PPCs and the research team. Our approach can be applied by others wishing to integrate PPI in developing reporting guidelines. Reporting guidelines help authors in reporting a specific type of research. They are often presented in the form of a checklist. In recent years, efforts have been made to include the perspectives of patients and members of the public to make sure that what matters to them is also reported. However, best practices for patient and public involvement in such projects do not yet exist. We developed a new reporting guideline for systematic literature reviews of outcome measurement instruments, called “PRISMA-COSMIN for OMIs”. In the development of this guideline, one patient partnered as a member of the research team, and five other patients and public members participated in the project. They all had a positive impact on the content and presentation of the guideline. We invited patients and public members to reflect and give feedback on their involvement in the project. Reflections and feedback were mostly positive. Key strengths of our approach were: This project shows that our approach is feasible. Here, we share insights we gained throughout the project. We translate “lessons learned” into 17 recommendations. These recommendations can be used by researchers who wish to include patient and public perspectives in developing new reporting guidelines.