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May 15, 2026BMJ Digital Health & AI0 citationsOpen Access

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

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MSMartin SchneiderAGAshley GriffinSFShawna Follis

Key Points

  • This review aims to explore how real-world data can enhance the understanding and management of rheumatoid arthritis.
  • Narrative review synthesising current literature on real-world data applications in rheumatoid arthritis.
  • Examination of barriers to using real-world data in clinical settings.
  • Discussion of potential pathways to improve the integration of patient-generated health data.
  • Identified various applications of real-world data in assessing disease burden and treatment efficacy.
  • Highlighted barriers including data fragmentation and underutilization of patient-reported outcomes.
  • Proposed actionable pathways such as enhancing digital health technologies for better data collection.

Abstract

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.

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Cite This Study

Schneider et al. (2026) studied this question.

synapsesocial.com/papers/6a06b983e7dec685947ac3e4https://doi.org/10.1136/bmjdh-2026-000070
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