Co-Production and Patient Preferences
A 2025 co-production study β in which ME/CFS patients collaborated with researchers to design care services β identified patient preferences for multidisciplinary teams, mHealth tools for symptom tracking and communication, and care pathways that respect energy limitations (Thornton et al. 2025). The studyβs small sample (n = 8) limits generalizability, but the methodology β designing services with patients rather than for them β represents an approach that health-services research increasingly recognizes as essential for chronic disease care design. (Certainty: 0.50 β small qualitative; co-production methodology is sound but generically applicable; no ME/CFS-specific validation. Falsifiable prediction: ME/CFS care services designed via co-production will show higher patient retention and satisfaction than services designed without patient input.)
Consequence: If co-production improves service design for chronic diseases generally, and ME/CFS patients have specific needs (energy-limited communication, multidisciplinary coordination, PEM-aware appointment scheduling) that standard care models fail to meet, then co-produced service design may be the most efficient route to closing the gap between what patients need and what healthcare systems deliver. The hypothesis is plausible but untested in ME/CFS specifically. Severity applicability: co-production is most important for severe/very severe patients (whose needs are least visible to clinic-based designers), but the methodology applies to all severity levels. For a systematic treatment of patient-researcher co-production across the research lifecycle β from study design to interpretation β see Patient-Generated Knowledge and Citizen Science.