2 A REAL CASE: EPINETWORK,
THE EPILEPSY NETWORK OF
LOMBARDY REGION
In line with interoperability objectives fixed by
Italian Ministry of Health, the Region of Lombardy
has laid the foundations for the creation of four
Pathology Networks, concerning Rare Diseases,
Epilepsy, Haematology and Oncology. These
networks enhance contact among clinical and
research centres working on the same pathologies,
provide a coordinated assistance to patients, helping
to ensure the delivery of high quality care processes,
empowering clinical research and spreading the
outcomes among the different actors.
Among the various initiatives, adherence to
Epinetwork, the Epilepsy Regional Network, is
being analyzed at Fondazione IRCCS Istituto
Neurologico Carlo Besta in a research supported by
the Italian Ministry of Health within the project
“Web Integrated Information System for the
management of clinical and research activities in the
field of the neuroscience and the implementation of
individual electronic health record”, coordinated by
the Institute and with the participation of A.O.
Ospedale Niguarda Ca’ Granda and Fondazione
Politecnico di Milano. Istituto Besta is an
internationally renowned centre of excellence in the
care of neurological diseases and, among them,
Epilepsy: physicians and researchers of the Institute
worked in a team of experts coordinated by the
Region of Lombardy in order to define semantic
standards needed to identify an epileptic patient and
to provide all information required to follow his care
process. A.O. Ospedale Niguarda, together with
Fondazione Politecnico di Milano, a research and
innovation partner connected to the Politecnico di
Milano technical university, is working at a
technical solution for the Institute, by exploiting the
methodology already followed during previous
experiences in the development of a reference
solution for the Hematologic and Oncologic
Regional Networks.
The solution will exploit the features provided to
the Electronic Health Record (EHR) which the three
partners are already realizing for the Institute
(Locatelli et al., 2009) ; each feature was analyzed
and developed trying to produce as much structured
data as possible, with the purpose of creating an
operative tool aiming at supporting ordinary
activities in a complex system able to provide useful
information to feed scientific research. Among
Besta’s scientific pipeline, Epilepsy represents an
opportunity to create a structured methodology to
collect data, which overcomes the Institute’s
borders, thanks to Epinetwork regional initiative.
3 A REFERENCE MODEL FOR
PATHOLOGY NETWORKS
A Pathology Network is the concretization of an
“inter-corporate virtual department” in which
operators involved in the same pathologic treatment
can profitably contribute to the process of diagnosis
and care, even if operating at different geographical
sites. This way of cooperation envisages, within a
wide domain, that highly specialized medical hubs,
qualified for high complexity treatments – as
intensive chemotherapy, stem cells transplant and
haemorrhage emergency management - and smaller
peripheral institutions could not only share and
exchange knowledge and opinions but, above all,
publish on the Pathology Network all medical
reports produced after patient’s treatment.
By following well known international standards,
it will be possible to study homogeneous data
collections, i.e. to analyze a wide range of disease
cases monitoring the results of new clinical
experimentations, or to compare different treatment
schemes with the purpose of defining common care
pathways for specific diseases and establishing
prevention practices (Tang et al., 1994).
The keystone in a Pathology Network is
represented by the implementation of a
technological platform linking clinical databases of
all hospitals involved in the network and enabling
the exchange of clinical data (e.g. patient cases,
scientific knowledge, etc.). This platform should be
carried out in a flexible way, in order to interconnect
the heterogeneous clinical data repository of each
nodes, realized with different technologies, various
information systems and data management tools.
Data sharing for each clinical episode takes
place only at a logical level, not at a physical one:
this means that clinical reports are not sent to or
received from hospitals but what is really shared is
the logical link by means of which each document
can be univocally retrieved by a HIS at its physical
location.
Italian Region of Lombardy is bringing forward
initiatives in this sense, with a centralized structure
represented by the extranet SISS (Italian acronym
for Social Healthcare Information System) and a
central domain embodied by an EHR called FSE, a
database collecting data related to the whole clinical
history of a citizen registered to the National
Healthcare Service (SSN). The cooperative logic
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