In this project, the Ludwig Boltzmann Gesellschaft (LBG) Open Innovation in Science Center invited a multi-stakeholder group consisting of researchers from multiple disciplines, citizen scientists, youth and patient advocates to co-create a guide ‘How to’ meaningfully involve patients and the public in research.
In a series of consecutive workshops, the interactions between researchers and the public and patients, e.g. building trustful relationships and communication with patients, and the project steering structures enabling active involvement of patients ant the public in research were discussed. As a result of these workshops, the ‘How to’ Guide for Researchers was co-developed to support the implementation of public and patient involvement (PPIE). It will further inform funding criteria for future PPIE activities and fosters a sustainable and meaningful implementation of involvement activities in research across disciplines.
Research shows that early and continuous involvement of the public and patients has a positive impact both on conducting more patient-centered research and on how research is conducted, namely towards more involvement of patients in research activities,and that this significantly impacts research findings. Involving the public in research empowers people with lived experience and improves the quality and impact of research (Staley, 2009).
Providing a ‘How to’ guide for Patient & Public Involvement and Engagement (PPIE) is relevant to aligning the mission of the Ludwig Boltzmann Gesellschaft (LBG) to conduct more patient-centered research in the medical field and more inclusive research in social sciences and the humanities that addresses societal needs. The LBG therefore co-created this document for conducting research based on PPIE principles including various perspectives from all involved stakeholders to serve as a central entry point for research based on PPIE principles.
In this document, you will find a detailed description about what PPIE stands for, why it is necessary to get involved, and how we co-created this ‘How to’ guide (Chapter 1). 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).
The target audience for this ‘How to’ guide is people working in research. Therefore, please read this guide through the “researchers’lens,”as it is intended to be a manual that will ultimately help and support research projects in applying PPIE principles. Please remember this perspective when browsing through the document.
Be aware that PPIE research projects all started from scratch and took a step-by-step approach. You do not have to change the world -in your case, your research -overnight. Start by introducing minor changes in your scientific workflow depending on your level of PPIE activities. We are convinced that every small step towards more patient/ public involvement will lead to better outcomes. We hope this guide supports you in developing meaningful PPIE into your projects, and we are happy to receive feedback and hear about your experiences applying PPIE principles in your own research.