[Privacy and epidemiology: let's find a shared solution]

Abstract

During the pandemic period, Italian epidemiologists managed to monitor the situation despite fragmented and often low-quality data flows, comparing themselves to other countries (such as England and Israel) that were able to provide valuable indications in very short times thanks to the availability of a large amount of interconnected data at the national level. In the same months, the Italian Data Protection Authority launched several investigations that triggered an immediate stiffening of the mechanisms for accessing data by epidemiological structures at both regional and company levels, leading to a significant limitation in the conduct of epidemiological investigations, and in some cases the complete suspension of important projects. The interpretation of the General data protection regulation (Gdpr) was found to be subjective and heterogeneous among different institutions. The path to legitimizing data processing appears obscure and subject to the sensitivity of the different actors involved in the process within companies and regions. Apparently, only economic reporting is unanimously considered the primary and legitimate use of data. The work of Italian epidemiologists has been called into question to the point of making it practically impossible to carry out their institutional duties, even though they are an integral part of the National health service's (Nhs) function to promote and ensure health and well-being for the population. Today, it is necessary to immediately initiate a path to identify shared solutions among the various actors at both the central and local levels, which allow epidemiological structures and professionals to carry out their tasks with serenity, while ensuring data protection. The obstacles to conducting epidemiological studies are not a problem of individual operators or individual epidemiology structures, but a block to the production of knowledge and, ultimately, to the processes of improving the Nhs.