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Parents’ Advisory Group

Background

Patient Public Involvement (PPI) in the realm of healthcare research and services has gained tremendous necessary attention, especially within the European context. The European Union has consistently prioritized the need to integrate the perspectives and insights of patients and the general public in the process of healthcare research and decision-making. Initiatives at the EU level, such as the Pediatric Regulation and the establishment of clinical trial networks like c4c and eYPAGnet, underscore the commitment to robust and ethical research, especially in pediatric settings.

The overarching European strategy emphasizes the transition from patients and the public being mere recipients of healthcare to becoming active partners in shaping it. The rise of PPI in Europe has not only made research more patient-centric but has also enhanced the trust and collaboration between the public and healthcare entities.

UZ Gent

UZ Gent's commitment to PPI is manifested in its establishment of the Youth Advice Council within pediatric Nephrology. Recognizing that pediatric healthcare has its distinct challenges and intricacies, this council aims to channel the insights of children and adolescents into the research and decision-making processes. With members aged between 12 and 18 years, the council plays a pivotal role in offering feedback on critical facets of pediatric research, ensuring that they resonate with the unique needs and preferences of the younger cohort.

Moreover, UZ Gent also hosts the PAWO initiative, an adult research council. PAWO, standing as a testament to UZ Ghent's comprehensive approach to PPI, ensures that the perspectives of adults are represented, especially in areas of research and clinical trials geared towards them.