Data integration across care settings: HCV monitoring among people who use drugs

Abstract

Hepatitis C virus (HCV) elimination among people who use drugs (PWUD) depends on monitoring systems that can follow individuals across the full care cascade, from screening through treatment to cure. In practice, PWUD move across services that rarely share data: harm reduction, addiction services, hospital units, primary care, and community-based organisations (CBOs). The resulting fragmentation produces incomplete epidemiological intelligence and leaves those most affected partially invisible to public health decision-making. This contribution presents a real-world experience from Italy examining how integrating data across care settings can strengthen HCV monitoring among PWUD. Building on the development of an integrated care pathway, the approach combines administrative data with patient-reported outcome and experience measures to capture dimensions not routinely included in surveillance. Findings indicate that data integration can address key surveillance gaps. First, linking datasets across services improves identification at each stage of the HCV care cascade, reducing loss to follow-up and improving the accuracy of epidemiological estimates. Second, incorporating low-threshold services (e.g. CBOs) extends coverage to populations otherwise missed by institutional data flows. Third, integrating patient-reported measures provides actionable insights into barriers to testing, treatment uptake, and continuity of care. This case study underscores the need for intersectoral governance models that formally integrate harm reduction, clinical care, and public health data. Embedding community-generated data within surveillance frameworks is a policy priority to ensure that monitoring systems reflect the populations most affected and support equitable and effective HCV elimination strategies.