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c. central repository database designing;
d. design and creation of web application for
manual data entry by physicians;
e. design and creation of web services for
automatic data extraction;
f. definition of tools for data analyzing and
reporting (Data Mining and BI);
g. definition of tools for publishing the results of
analysis;
Activities related to collaborative platform:
h. portal design and implementation;
i. setting up an initial rare diseases data;
j. Portal promotion in national and international
level.
The most complicated phase in the CIT platform
project development is expected to be the phase e.,
because it implies collecting and importing data
from heterogeneous medical data sources.
Differences in medical standards between countries
will create special difficulties, which could be partly
overcome by involving international medical centers
in the very beginning of the project.
6 CONCLUDING REMARKS
Due to the project specificity and its national
(international) importance, precise analysis of the
evaluation plan for the return of investment is
relatively difficult. The very nature of the platform is
such that its’ result is significant at the national level
and in a broader perspective. For these reasons we
made a project application and funding request that
has been sent to Serbian government. Since we are
supported in this work partly by Nis Clinical Centre
and partly from National health insurance
organization we expect that our efforts will be
recognized as national interest.
At the same time there is a benefit immeasurable
financially, reflected in the satisfaction of patients,
and their restored sense that society cares about
them, and kind of returning them from the social
care margins. The other useful effect can be
achieved by including the pharmaceutical companies
in the platform through advertising their
manufactures, through the use of data collected and
payment for the service. A special aspect is the
possibility of forming a Balkan or even European
data centre to collect the data on rare diseases.
Certainly, the perspective is that after the project
achieves the planned results, it can be spread in
some international projects (for example within so-
me of FP7 calls).
There is also a factor directly immeasurable: the
patients themselves can access useful information to
reduce their cost of treatment and personal
problems. There is a great probability that the costs
of rare diseases diagnostic can be significantly
reduced, if we successfully develop such a platform.
If we involve medical doctors employed in the
public health in education and use of such CIT
platform, they can reduce the number of expensive
medical analyses for diagnostic in rare diseases.
Software tools can greatly assist rapid diagnosis
of rare diseases, of course after a period of data
collection in the repository, in order to create a
sufficient quantity of data to perform the conclusions
based on the knowledge base.
And at the end, software tools that will be
developed to analyze the data stored in the
repository can be used for many similar and
commercial databases. Also designed model of CIT
platform can be used in other social and public needs
(justice, sport, investment, etc.).
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