# Ensuring the Long-Term Preservation of and Access to the Italian Federated Electronic Health Record
## 5 Discussion and Conclusions  
Within the present study, the methodological approach to long-term preservation provided by the Guidelines is maintained. They, in fact, have a legally binding nature and erga omnes validity, they provide the strategy for developing the management and preservation framework and, at the same time, they allow for making an enriched and enhanced use of metadata. The Guidelines clearly identify which are the requirements to be satisfied for guaranteeing the effective preservation process, in order to be sustainable for the National Health System and for all the actors involved in the entire document management process, from the creation to the long-term preservation. This study intends to bridge the gap between the substantial legislation on digital preservation and the lack of operational guidance showing a proper use of metadata. As seen, it allows for achieving long-term preservation for and access to the FSE, guaranteeing the coherent and consistent information retrieval of reliable documents which are part of the FSE. The proper use of the analyzed metadata, for expressing if the document belongs to a specific FSE and for attesting its storage in a long-term preservation system, can guarantee: (i) the persistence of the accessibility of the FSE; (ii) the maintenance of the probative value of the documents accessible through the FSE systems, thanks to the long-term preservation of the corresponding original documents; (iii) the validity of the document accessible through the FSE systems beyond the time limits of validity of the digital signature, since its storage in the producer's long-term preservation systems and the presence of the related metadata within the registry, ensure that the duplicate accessible via FSE continues to be a valid document; and (iv) the improvement of interoperability between FSE repositories and producer preservation systems. Regarding the latter, it is well recognized that the use of standards, in general (and the standard metadata application), are an opportunity to specifically ensure the semantic interoperability accomplishment. Finally, the added value of the proposed solution is to (i) ensure the access to legally valid, reliable and as well as enforceable towards third parties documents; (ii) exploit the existing metadata schema, by not involving further technical and economic efforts for the FSE systems; and (iii) not require the duplication of the long-term preservation of the FSE documents, in compliance with the current regulation on the subject, which states that the FSE must be established by preferring solutions that do not generate a duplication of health information in a new database [2]. An interesting subject to address in the future concerns the analysis of possible solutions about what happens to the FSE preservation and access after the patient's death, for which a normative reference is still under discussion. In this case, it is possible to fundamentally hypothesize three implementation scenarios for the management and preservation of the FSE registry and repository:  
* Patient's data and documents remain online in both registry and repository: this solution allows them to be accessed promptly, even if the need for emergency access is no longer necessary. In the long-term this solution becomes onerous for FSE systems;
* Only the patient's data in the registry remain online: this allows us to promptly identify the documents of interest, but it will take time for the recovery of the document stored by the producer.