How to Involve Patients in Research: An Example of Patient and Public Involvement and Engagement (PPIE) With an AYA Cancer Survivor

One of the Ambassadors for EU-CAYAS-NET, Oriana Sousa, is actively involved in Public and Patient Involvement and Engagement (PPIE). Since the end of 2020, she is in the Patient Advisory Committee for the Eatris-Plus* project (eatris.eu/projects/eatris-plus). For that reason, she was invited by The European Patients Forum to record an episode for the EU Patients’ Podcast to discuss meaningful patient engagement that took shape throughout all the activities of the Project. One of the contributions of PAC’s work in the project was the launch of the PERC- Patient Engagement Resource Center, which works as an easy to navigate platform to support patient engagement in research (a toolkit for researchers but also patient advocates: patient-engagement.eu) During the podcast, Oriana also comments generically on what her journey has been like as a patient advocate and how being part of EU-CAYAS-NET is very meaningful to her. She also reflects on the future: she hopes that in the future more patients will feel supported, educated and empowered to make their own health decisions and that as a society Youth Cancer Survivors must take an active role in health literacy. Note: EATRIS-Plus Project aimed to build further capabilities and deliver innovative scientific tools to support the long-term sustainability strategy of European Advanced Translational Research Infrastructure in Medicine (EATRIS).