Harnessing patient health data to benefit individuals and advance research: a focus on rheumatoid arthritis - a narrative review.

Rheumatoid arthritis (RA) is a chronic systemic autoimmune disease characterised by fluctuating symptoms, progressive functional decline and substantial impacts on quality of life. Despite therapeutic advances, clinical management often relies on infrequent, clinic-based assessments that may fail to capture daily variability in pain, fatigue, mobility and treatment response. Increasingly, real-world data-including patient-reported outcomes, electronic health records, registries and digital health technologies-offer opportunities to characterise disease burden better. This narrative review examines the evolving role of real-world evidence (RWE) in RA with three objectives: (1) identify current applications, (2) examine persistent barriers and (3) explore actionable pathways to enhance the utility of RWE. Collectively, these approaches position RWE to complement randomised trials through the wider adoption of pragmatic trial designs, target trial emulation and digital health technologies to generate regulatory-grade evidence. By integrating and optimising patient-generated health data, the healthcare system can identify and calculate hidden costs that are currently not captured by traditional metrics. This provides a clear policy rationale for revamping health policy and healthcare delivery, ensuring appropriate resource utilisation and significant healthcare savings. To bridge the gap from clinical trial to practice, a coordinated dialogue across multiple stakeholders is required to establish patient-centred data sovereignty and governance models, ensuring patients are the primary beneficiaries of the digital health revolution.