AMICA: an electronic patient record

specifically designed for an amyloidosis

network

R. Ferrari1,2, E. Caffi3, S. Quaglini2,

M. Stefanelli2, P. Russo1, G. Palladini1,

F. Lavatelli1, & G. Merlini1

1IRCCS Policlinico San Matteo Pavia, Italy,2Department of Computer Science and Systems,

University of Pavia, Italy, and 3CBIM, Pavia, Italy

Abstract: The electronic patient record AMICA

stems from a collaboration between the University of

Pavia and the Amyloidosis Study Group of Pavia

belonging to the IRCSS Policlinico San Matteo. It

has been designed to support clinicians involved in

the management of amyloidosis, not only in the

Pavia center, but also in the peripheral institutions

that care for amyloidosis and are distributed

throughout Italy. AMICA is a data collection system

aimed at meeting the main objectives of a healthcare

application based on Information and Communica-

tion technologies (ICT): to assist physicians in the

integration of diagnostic and therapeutic paths, to

optimize the use of available resources, to document

processes of care and their relationship with health

and cost outcomes, and to provide valuable support

to quality control of both data input and performed

procedures. Such a system is essential for rare

diseases where information is scarce and, in general,

not easily accessible.

Introduction: Besides the complexity of the dis-

order, the management of systemic amyloidosis

shares the common difficulties of rare diseases, such

as the need of gathering a sufficient number of

patients to (a) create and maintain the physicians’

expertise and (b) to conduct sound clinical trials [1];

this situation asks for the creation of disease registries

[2] and referral centers. As a matter of fact, in 1986 a

national network coordinated by the Pavia referral

center, the Italian Amyloidosis Study Group, was

created with the aim of providing care at the state-of-

the-art level and building the frame for conducting

multicenter clinical trials. In order to gather patient

data in a common format and to share them in real

time, after a careful users’ needs analysis within the

Group, we created AMICA (AMIloidosi CArtella),

an electronic patient record able to collect all the

patient’s data, from the diagnosis to the follow-up.

Methods: The electronic patient record (EPR) has

been developed taking into account the presence of a

reference centre (the centre of Pavia), that connects

all the other centers scattered across Italy. This requi-

rement led us to use a web-based approach, exploit-

ing all the technologies of transmission, processing

and presentation of the data that were grouped under

the name of Web 2.0 Technologies [3,4].

Relying exclusively on open source environments,

AMICA is based on Hibernate (H8), Spring,

Struts2, and Ajax.

H8 is an object-relational mapping tool, that can be

seen as a middleware platform that lies between the

application and the database, whose purpose is to

automate the procedures for CRUD operations

(Create, Read, Update, Delete); it manages the

persistence of Java objects transparently, and leads

to the advantage of completely exempting the deve-

loper from the work related to data recovery and

conversion. The mapping between Java objects and

database tables, in general done by XML documents,

in our case is done by the mechanism known as

‘annotation’. The annotation, born with Java5, allows

moving the metadata inside Java objects, thus limiting

the proliferation of configuration files.

Spring is a framework handling the complexity in

the development of ‘enterprise’ application in Java.

It implements new programming models: IoC

(Inversion of Control) and AOP (Aspect Oriented

Programming). IoC is a pattern that minimizes the

dependencies between objects, making the applica-

tion more robust and the reuse of components

easier. AOP is a new programming paradigm that

aims at decoupling the characteristics of a system

that are logically independent from each other; this

better modularizes object-oriented programs. Spring

favors the development of simple, modular, and

testable code.

Struts2 is a framework for developing web

applications based on the ‘Model-View-Controller’

(MVC) pattern. MVC allows you to decouple the

various components of the application control,

business logic, and presentation. More precisely,

the Model defines the data model on which the

users’ views are based; the View is the representation

of the current status of Model; the Controller

determines how the application responds to user

input. Each request is handled by one or more

interceptors. The interceptor calls the action that

produces results that can be returned to a view, or

data back into a new action. Besides the typical

advantages of the MVC pattern, such as modularity,

reusability, maintainability, and extensibility, Struts

provides a set of tools to the development process.

Ajax contains a set of established technologies as

XML and JavaScript, eliminating the typical Web

interaction characterized by alternating moments of

dialogue-response. The communication between the

User Interface and the server is done asynchro-

nously. The user, after a request, should not

interrupt his activities pending the response, but

may continue to interact with the system. The benefit

is a more fluid interaction.

For the AMICA’s project administration we also

use Maven, for managing and documenting code

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compilation, distribution, and collaboration of the

development team; eventually JUnit was used for

testing.

Results and discussion: AMICA allows physicians

to cooperate and share not only information about

patients, but also about the implemented diagnos-

tic and therapeutic strategies. It manages all patient

data, from the first visit throughout the follow-up,

keeping track of any data modification. It contains

some ‘intelligence’, providing links to guidelines

and protocols (see Figure 1), immediate visualiza-

tion of the data necessary to plan therapeutic

interventions (e.g. cardiac biomarkers and free light

chain data in AL amyloidosis), and alerts in case of

mismatch with predefined data constraints, such as

data validity ranges, drug–drug interaction, etc.

(see Figure 2).

AMICA provides tools for rapid search and

consultation of information and produces specific

documents (e.g. the clinical report, with the visit and

lab test results, and therapeutic indications for the

general practitioner). It is also possible to export

documents in various formats (XML, DOC, PDF,

and CSV) for further exploitation.

Almost all data items are encoded to allow a quick

data input (radio buttons and drop-down menus), a

better data quality, and more reliable statistics and

analyses.

Since AMICA is built with a dedicated software,

opposite to a standard EPR, data entering and report

generation is fully compliant with the specific

amyloidosis clinical routine. Moreover, it allows

generation of a so-called ‘scientific database’ useful

for the medical community for improving knowledge

about this rare disease.

The AMICA project was born to give concrete

and functional support to clinical researchers

working on improving procedures for diagnosis

Figure 1. In any moment, the user can visualize and navigate the clinical practice guidelines for the diagnostic and treatment procedures.

Here, the MDex chemotherapy protocol is described. The guideline navigation menu is on the top-right.

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and treatment of rare diseases, by providing an

advanced tool for the collection and integration of

data coming from referral national centers. AMICA

represents an advanced solution for optimizing inte-

gration processes and data management, so far carried

out on paper. This project was developed as part of a

Community of Practice, the Italian Study Group for

Amyloidosis. The community involves different parti-

cipants at various levels: medical experts in specific

domains, experts in information systems and knowl-

edge representation, and healthcare personnel from 68

medical centers. All members are identified within a

common purpose, i.e. the optimal treatment of

Systemic Amyloidosis through earlier diagnosis, accu-

rate and effective therapy.

Declaration of interest: Supported by Grant N.

9965 from the Associazione Italiana per la Ricerca

sul Cancro Special Program Molecular Clinical

Oncology, Fondazione Cariplo Nobel Project, Italian

Ministry of University and Research (PRIN N.

2007AE8FX2_003 and 2007XY59ZJ_005;G.M.).

References

1. Kenny TD, Jessop EG, Gutteridge WH. Monitoring clinical

quality in rare disease services-experience in England. Orpha-

net J Rare Dis 2008;3:23.

2. Messiaen C, Le Mignot L, Rath A, Richard JB, Dufour E, Ben

Said M, Jais JP, Verloes A, Le Merrer M, Bodemer C, et al.

CEMARA: a Web dynamic application within a N-tier architecture

for rare diseases. Stud Health Technol Inform 2008;136:51–56.

3. Singer JB. The role and regulations for technology in social

work practice and E-Therapy: social work 2.0. In: Roberts AR,

editor. Social Worker’s Desk Reference (pp. 186–193). New

York, USA: Oxford University Press; 2009.

4. O’Reilly T, Battle J. Web Squared: Web 2.0 Five Years On. Web

2.0 Summit Conference, Oct. 20–22, San Francisco, 2009.

Available at http://assets.en.oreilly.com/1/event/28/web2009_

websquaredwhitepaper.pdf. What is Web 2.0. Design Patterns

and Business Models for the Next Generation of Software, Vol.

30. 2005. p 2005.

The online version first published on 14 July 2011 showed the incorrect page numbers of this article. They have

been now been corrected on this version.

DOI: 10.3109/13506129.2011.574354089

Figure 2. From the AMICA graphical user’s interface, the form for the collection of laboratory tests results is shown. Normal ranges are not

fixed, but depend on the laboratory where examinations are performed. Warnings are shown when a measured value is out of that range. A

demographic summary and the general menu is shown on the right.

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