Health Dossier in Italy: Elements for Reflection, What’s New, What Are Possible Improvements

Abstract

In recent years the European Union and Italy are calling for a new healthcare attitude in response to the strong growth of health needs; eHealth may be a tool to facilitate change in a view of connected health; in order to properly manage information, it is necessary to realize a substrate of data, information, and knowledge, shared among all the actors in the social and health system, to obtain a holistic view of the most relevant business processes. We applied the method of use cases to define the functional requirements of a platform for continuity of care. As an example of application, we present an analysis of the Italian FSE (health dossier) and discuss its limits and its evolution.

LAVSE (Virtual Laboratory for eHealth) is composed of various researchers from different institutes of the National Research Council (CNR), Italy.

Appendix: The Manifesto and LAVSE-CNR and SIT on FSE [9]

• 1. The FSE is a citizen’s tool that helps in improving the quality of his/her life, of his/her family, and of community.

• 2. The FSE is a tool of health and social providers. They use this tool according to technical and scientific knowledge as well as their responsibilities, adapted to patient’s needs.

The Significant Use of the FSE

• 3. The FSE promotes the proactive role of the citizen, even through the presence of dedicated services to enable them to (a) monitor the health and development of therapies, (b) improve the lifestyles, (c) strengthen the self-care management, and (d) collaborate with more consciously with health and social providers.

• 4. The primary value of the FSE is the ability to stimulate an environment that works with citizens and health and social providers, coordinating and interconnecting the different types of processes that act on the patient to give rise to a global process of social and health services. To this end the FSE facilitates the management and sharing of information by all professionals, also assembled in functional groups, in the context of care pathways shared.

• 5. Secondary uses of FSE for purposes of clinical governance, epidemiology, scientific research, vocational training, health education, and proper allocation of resources are reconciled with the main aim to improve the management of individual and community health and to reduce the burdens of bureaucratic-administrative, managerial and organizational tasks, as well as control of productivity and spending.

The FSE in the Context of eHealth

• 6. The FSE supports the other tools of eHealth for health management and is interoperable with them; as all systems connected to the health protection, it is consistent with (a) the Constitution, (b) the definition of health of the World Health Organization, and (c) general principles on the health of the European Union, including cross border aspects of care and freedom of treatment.

• 7. Each value-added service based on FSE must (a) join the interests of the population, the potential of the industry world, and the skills and achievements of scientific and technological research; (b) be designed and implemented in an environment like living lab through a joint development of multidisciplinary organizational models and technological solutions; (c) take into account the holistic view of the process in which fits in terms of coproduction and data sharing and the activities of any other interconnected processes; and (d) be subjected to evaluation of the clinical risk with results made public.

The Adoption Process

• 8. The widespread adoption of FSE and related value-added services (a) follows a well-defined roadmap managed from a control booth with a strong political decision-making and (b) develops in such a way that the FSE is used primarily for the solution of problems connected with other high-impact problems, addressed in a holistic manner, based on a virtuous relationship between citizens and concerned professionals.

• 9. The adoption must be supported by (a) an awareness campaign directed at citizens about the benefits and the opportunity of the FSE and (b) training programs and staff training at all professional levels in order to provide an adequate preparation and a correct approach to resources of eHealth.

The Content

• 10. The FSE manages the object information necessary to the definition, planning, implementation, and historicizing of a care plan in the context of prevention, diagnosis, care, rehabilitation, and social health. These information objects concern data, complex information, warning, and the discussions of clinical case, structured according to a precise dictionary of cumulative clinical and social and health data.

• 11. The FSE enables the management of individual data, clinical and nonclinical, so as to allow them to connect semantically between them and other information; the data (a) can be processed according to precise semantic standards, systems of encodings, and terminology subsidiaries; (b) are associated with attribute definitors/associations (metadata) appropriate to allow a better and intelligent use of data and a better research; (c) are shared with the candidate applications to use them, developed according European standards; and (d) are relating to documents that contain them in order to interpret its context.

• 12. The model of the concepts underlying the processes, the standard of integration of interoperability, and coding systems are developed and adopted at national, European, and international level, in accordance with the output from the respective authorities.

• 13. The information object present in the FSE and necessary to a medical doctor or a social and health provider to carry out social and healthcare activities and assistance can be stored in the same system of the structure in which the staff works, even if generated elsewhere; the storage of any information object relative to the patient must comply as expressly authorized by the latter and is associated with the storage of the information required to be able to trace, within the FSE, the document that contains the element in question.

• 14. The information collected for purposes not social or health, even if they are tied to the assistance of the citizen (especially if at risk of rapid obsolescence), can be managed in a different system than the FSE, such system must be interoperable to all levels with the FSE, and the information flows must be interwoven with the related information flows of the FSE.

Privacy

• 15. The FSE must ensure, in any application, the respect of the protection of personal data, professional secrecy and its declination practices, technical measures of security, and guidelines and indications coming from the Authority for the Protection of Personal Data.

• 16. The FSE must facilitate its use for purposes of scientific and epidemiological research, reworking the information without causing any damage or limiting the protection of personal data. The flow aimed at boosting the FSE will be fully subject to the discipline on the treatment of personal data and the resulting information requirements and collection of consent; it is necessary to provide methods and timing of anonymization of information which would implement the feed flow of the data warehouse, in accordance with the principles that govern the protection of privacy.