From Consultation to Leadership: The Role of Patient-Initiated and Researcher-Initiated Questions in True Patient-Centered Research

Despite the widespread adoption of patient-centred research (PCR), many studies remain researcher-led, limiting true patient leadership in shaping healthcare priorities. This paper explores the distinction between patient-initiated and researcher-initiated questions in clinical research and argues for a hybrid approach that integrates both perspectives. While patient-driven research ensures alignment with real-world healthcare needs, researcher-led studies uphold methodological rigor and scientific validity.Patient-initiated research empowers individuals to highlight care priorities that researchers may overlook, such as treatment burden, healthcare accessibility, and disparities in care delivery. Studies grounded in patient-defined priorities tend to have higher real-world relevance and improved adoption in clinical settings. However, researcher-led studies remain crucial for developing evidence-based interventions and ensuring clinical trial robustness. The challenge is to bridge patient priorities with methodological expertise while maintaining both scientific credibility and practical applicability.This paper proposes a hybrid model for participatory research, emphasizing: (1) infrastructure for patient-initiated research, including Patient Advisory Boards; (2) balancing researcher expertise and patient priorities in study design through co-investigator roles; (3) community-driven recruitment strategies to enhance inclusivity; (4) patient-led data interpretation, utilizing AI tools for accessibility; and (5) patient-led dissemination, ensuring research findings reach policymakers and communities.By moving beyond consultation toward patient leadership, this model promotes meaningful engagement that enhances research relevance, democratizes knowledge production, and strengthens the impact of evidence-based healthcare improvements. Integrating patient-driven and researcher-led approaches can transform the research landscape, ensuring that scientific progress directly serves those it aims to benefit