CGS Paper 3 - Patient-Engaged Registries (PER): How Patient Organisations Enabled Real-World Clinical Data Systems

Abstract

This paper introduces Patient-Engaged Registries (PER) as a distinct class of clinical data systems in which patient organisations function as constitutive system actors rather than external stakeholders. Drawing on empirical experience from the development of the Swedish Rheumatology Quality Register (SRQ), the paper shows how patient organisations enabled long-term legitimacy, clinical participation, and system stability. It argues that patient engagement is not an ethical add-on but a structural design principle that cannot be retrofitted. Positioned within the Clinically-Grounded Systems (CGS) series, the paper contributes a governance and system-architecture perspective relevant to learning health systems, national data platforms, and AI-enabled clinical infrastructures.

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