Ensuring the Long-Term Preservation of and Access to the Italian Federated Electronic Health Record

Featured Application The results of this work will be included in a Technical Annex to the Agency for Digital Italy's Guidelines for the creation, management and preservation of digital documents, which will include management and long-term preservation conditions, specifically focused on the Italian Federated EHR (called the FSE) and its documents. The Italian Electronic Health Record (called the FSE) is based on a federated architectural model and involves various types of health data and documents deriving from public and private health stakeholders. Clinical documents are stored in repositories and indexed in a central regional index (registry) according to a defined metadata schema. The FSE repositories can be distributed in the regional network or centralized at the regional level, or regions can use subsidiarity services offered by the National Infrastructure for the regional FSEs Interoperability. In this scenario, this study addresses the open issue of the FSE documents' long-term preservation and access over time, since the responsibility of their preservation is distributed among different stakeholders. As a consequence, the process traceability is necessary to ensure that a document indexed in an FSE is accessible over time, regardless of the document local discard policies applied for legal fulfilments. The results of this study show that the enhancement of metadata use could support the management and long-term preservation of the FSE documents. Addressing this issue is, finally, fundamental to guarantee the correct tracing and access to the clinical path of a patient and to ensure the efficiency of the entire care setting.