Patient and Public Involvement and Engagement (PPIE) means carrying out research “with” or “by” patients and members of the public rather than “to”, ”about” or “for” them (INVOLVE). PPIE activities, aim to empower the public and people with lived experience through involving them in research. Projects benefit in terms of increased research quality and its impact on society: by addressing patients’ and the public’s needs and embracing their knowledge from personal experience or practice.
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. This significantly impacts research findings and empowers participating patients or citizens. Therefore, the PPIE Implementation Program aims to support activities with patients and the public in the area of ‘active involvement’ across the different phases of the research cycle (from setting the agenda to interpreting data) and research governance.
“Participation” can thereby happen at very different forms as illustrated in figure 1. It is important to understand that more empowerment is also associated with the relinquishment of control and must therefore be based on mutual trust. Counterintuitively to the scientific practice having as much control over the research process as possible, PPIE activities demand a new perspective on this matter. Here it is assumed that sharing ownership enables more relevant research and enables scientists to achieve better results. However, conditions allowing such cooperation do usually not occur on their own. Because such measures is not always easy to implement in the daily scientific routine, we support the Austrian PPIE environment with the PPIE Programme.
The “How to” PPIE Guide for Researchers unifies current literature, best-practice examples and knowledge developed in a co-creation process with researchers from various disciplines, patients, patient organizations, youth and other stakeholders. Throughout a multi-step process 24 different stakeholders ranging from students to researchers discussed the goals of the process and the formulation of the PPIE principles.
In the PPIE Guide you will find a detailed description about what PPIE is, why PPIE activities may serve your goals and the goals of those involved and how you can implement them in your projects. The guidelines include recommendations for patient and public interaction, relevant governance structures (including budget and project oversight) and suggestions for an organizational framework that facilitates PPIE activities. The guide also comes with self-assessment checklists for your ongoing or planned PPIE activities as well as it refers to additional resources such as key papers, databases or other important guides.
If we caught your interest you can find the “How to” PPIE Guide in the Open-Access-Repository Zenodo: http://doi.org/10.5281/zenodo.3578321
Please take also a look into our resource section, for more helpful material and sources.