Ten years on: how far have we come in patient engagement in diagnosis?

Abstract

The 2015 National Academy of Sciences, Engineering and Medicine report, Improving Diagnosis in Medicine, is known for its inclusive approach to patients. This paper explores the evolution of research in patient engagement in diagnosis over the past decade, drawing from peer-reviewed literature, policy initiatives, and institutional programs. Major themes include expansion from practical patient aids to co-designed patient reporting systems and patient-reported measures; a focus on diagnostic equity across all populations and conditions; and the emergence of comprehensive multidisciplinary theories framing a "diagnostic ecosystem." Drivers of change include long-standing frameworks for patient engagement, advances in health information technology, open access to medical records, and regulatory initiatives designed to enhance patient autonomy and enable systematic capture of patient perspectives. Future research in this area should improve patient-reported measures and reporting systems, identify and address diagnostic disparities, and co-create pathways to fully embrace and value the emerging patient voice.