PUBLIC ENGAGEMENT IN RESEARCH INFRASTRUCTURES FOR MISSION CANCER: MANAGING COMPLEXITY OF EMERGING TECHNOLOGIES

ongoing

Enhancing stakeholder engagement in cancer research is essential for advancing the relevance, impact, ethicality, and equity of research outcomes. Engaging patients, caregivers, clinicians, researchers, and community representatives in the research process enables synergistic optimisation of potential impact. The PERIFORMANCE project focuses on promoting local action for Mission: Cancer and aims to leverage the federated biobanking domain as focal points for transdisciplinary research and innovation activities with European outreach. Biobanks, particularly those using population cohorts dedicated to cancer research, set the sampling frame to explore best practices and identify needs in the context of stakeholder engagement. PERIFORMANCE goes beyond the standard patient/public involvement (PPI) practices and adopts a quadruple helix perspective on stakeholders, which includes patients and donors, research and healthcare professionals, industry partners, and policymakers. By addressing the use of AI and EHDS in biobanking within cancer research, the project aligns with the call’s objectives to foster systemic solutions at a time of major sociotechnical transformations. Its emphasis on ethical, legal, and societal dimensions resonates with the call’s focus on ensuring that technological advancements contribute positively to public trust and societal well-being. PERIFORMANCE prioritises broad dissemination and training, ensuring its outcomes are widely accessible and scalable. Its approach supports the call’s goal of achieving broad, lasting impact across Europe, reinforced by an open call for bottom-up engagement exercises in diverse contexts, considering local or regional needs. PERIFORMANCE will contribute to the EU’s Mission: Cancer by fostering informed participation among stakeholders, enhancing the ethical use of new technologies and boosting the relevance and equity in public policy and research outcomes.