Patient and Public Involvement and Engagement in research – A „How to“ Guide for researchers

Created March 2, 2022, 9:45 a.m.
Updated Sept. 19, 2022, 7:52 a.m.

This guide is for learning why and how to meaningfully involve patients and the public in research. In Chapter 1, you find a detailed description about what Patient and Public Involvement and Engagement (PPIE) stands for, why it is necessary to get involved, and how we co-created this ‘How to’ guide together with a multi-stakeholder group consisting of researchers from multiple disciplines, citizen scientists, youth and patient advocates. In Chapter 2, you will find the main outcomes from all co-creation workshops regarding PPIE principles. This includes patient and public interaction, relevant governance structures (including budget and project oversight) and the organizational framework that facilitates PPIE activities. In chapter 3, we provide self-assessment checklists and present self-assessment PPIE tools. Chapter 4 covers suggestions on how to monitor PPIE activities, followed by additional resources such as key papers, databases or other important guides (Chapter 5).

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