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Design of an Electronic Health Record
for Treating and Monitoring Oncology
Patients in Chile
CARLA TARAMASCO1,DIEGO RIVERA2, CAMILO GUERRERO3, and GASTÓN
MÁRQUEZ4
1Instituto de Tecnología para la Innovación en Salud y Bienestar, Centro para la Prevención y Control del Cáncer (CECAN), Facultad de Ingeniería, Universidad
Andrés Bello, Quillota 980, Viña del Mar, 2520000, Valparaíso, Chile (e-mail: carla.taramasco@unab.cl)
2Instituto de Sociología, Pontificia Universidad Católica de Chile, Vicuña Mackenna 486, Santiago, 7820436, Chile (e-mail: dirivera1@uc.cl)
3Escuela de Enfermería, Universidad de Valparaíso, Angamos 655, Viña del Mar, 2540064, Valparaíso, Chile (e-mail: camilo.guerrero@uv.cl)
4Departamento de Ciencias de la Computación y Tecnología de la Información, Universidad del Bío-Bío, Chillán, 3780000, Chile (e-mail: gmarquez@ubiobio.cl)
Corresponding author: Carla Taramasco (e-mail: carla.taramasco@unab.cl).
This work was funded by the ANID FONDAP 152220002 (Centro para la Prevención y Control del Cáncer (CECAN))
ABSTRACT Identifying the clinical needs to evaluate and manage the treatment and monitoring of cancer
patients is a multidimensional challenge in healthcare institutions. In this regard, electronic health records
(EHRs) are beneficial for managing clinical information; however, EHRs focused exclusively on patients
with cancer have not been sufficiently adopted. In Chile, the need for oncology EHR has only been briefly
addressed, resulting in insufficient updated and systematized information on oncology patients. In this paper,
we propose the design of an oncology EHR that manages critical variables and processes for the treatment
and monitoring of patients with cancer in Chile. We used a systematic methodology to design a software
architecture oriented to focus groups and interviews to elicit the requirements and needs of stakeholders. We
created and described an EHR design that considers four modules that group and manage the main variables
and processes that are critical for treating and monitoring oncology patients. Enabling and designing a
treatment and monitoring registry for cancer patients in Chile is essential because it allows for the evaluation
of strategic clinical decisions in favor of patients.
INDEX TERMS Cancer, Oncology, Electronic Health Record, Attribute-Driven Design, Chile
I. INTRODUCTION
Cancer causes millions of deaths each year, generating high
economic and social costs both in terms of the cost of
treatment and the compromise it generates in the work pro-
ductivity of those directly affected and their families and/or
caregivers [1]. According to the World Health Organization
(WHO) [2], cancer is associated with social determinants
of health, such as socioeconomic status; educational level;
working conditions; the quality of basic resources such as
water and various health services; risk factors such as poor
nutrition or unhealthy lifestyles; and structural conditions
associated with public, socioeconomic, cultural, and environ-
mental policies. In this way, it is possible to show marked
inequalities in the distribution of this pathology, which makes
it more complex to address, given that it is possible to observe
regions with higher mortality from certain types of cancer as
well as differences between men and women [3].
Health institutions worldwide have defined their mech-
anisms for treating and monitoring cancer patients. These
mechanisms range from clinical processes, government poli-
cies, and health campaigns, to the development of monitoring
care plans. Monitoring aims to evaluate the effectiveness of
treatment, its duration over time, to detect complications of
the disease or associated diseases, and to monitor the pos-
sible long-term adverse effects of treatment [4]. In addition,
monitoring is appropriate for diseases with a course tending
towards chronicity or recurrence, whose potential complica-
tions are of sufficient severity, and whose early management
would be of benefit to the patient to be monitored.
Although treatment and monitoring strategies for cancer
patients have proven successful in some countries, the in-
creasing number of cancer patients, the inclusion of tech-
nologies in healthcare, and the need for fast, accurate, real-
time, and quality data to evaluate new treatment and moni-
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toring strategies force healthcare institutions to digitize their
processes, including the cancer patient registry [5]. In this
regard, electronic health records (EHR) are real-time, person-
alized, and digital versions of a patient’s history that make
information instantly and securely available to authorized
users. While an EHR contains patients’ medical and treat-
ment histories, an EHR system is designed to go beyond the
standard clinical data collected in a provider’s office, and can
include a broader view of a patient’s care [6].
Clinical information systems (including EHRs) are com-
posed of software that meet the needs of both patients and
stakeholders. The development and deployment of clinical
information systems involve several stages that depend on
the type of development methodology selected by the teams
[7]; however, there are basic stages that consider software
development: (i) requirements identification, (ii) analysis
and design, (iii) construction, (iv) testing, (v) integration,
and (vi) maintenance. Requirements identification, system
analysis and design are the most fundamental stages of the
systems, as they are the inputs for the following stages. The
requirements describe the main needs of stakeholders as well
as the fundamental and critical characteristics of the system
[8]. The design, on the other hand, reflects the vision of the
system, which conceptualizes, encapsulates, and implements
the system’s functionalities. In turn, design analysis allows
the analysis of which qualities or systemic properties are
satisfied in the system [9].
In Chile, several public and private institutions have pro-
posed initiatives to create a source of information on patients
with suspected, diagnosed, treated, and monitored cancer for
disease surveillance, data collection, and support scientific
research to assist in public health decision-making and in
the management of care for people with the disease [10].
Nevertheless, these institutions do not have the capacity to
manage such initiatives systematically and digitally, which
leads to several problems with the interoperability, structure,
standardization, speed, and interpretation of patients’ cancer
data. Furthermore, health institutions do not have sufficient
capacity to automatically share information with Chilean
health authorities, resulting in biases in national treatment
plans and monitoring of patients with cancer. The challenges
described are not limited to the clinical setting. Because the
treatment and monitoring of oncology patients must satisfy
many different views of different stakeholders, there is insuf-
ficient information on which qualities attributes an oncology
EHR must satisfy stakeholders’ views. This implies that there
is insufficient input for designing a technological architecture
that meets the needs of cancer patients and clinical staff,
which makes the construction, testing, integration, and main-
tenance of oncology EHR extremely difficult.
This study addressed the technical design of a national on-
cology EHR in Chile that aims to store high-quality clinical
information and generate knowledge from variables related
to cancer patient treatment and monitoring. Through the use
of a systematic system design and appropriate stakeholder
identification, we identified both clinical and technological
needs to be met by oncology EHR. These needs translate into
the identification of clinical variables and processes related to
the monitoring and treatment of oncology patients in Chile,
which are then mapped into an oncology EHR design. The
contributions of this study are as follows:
•The design of an oncology EHR for the treatment and
monitoring of cancer patients in Chile, obtained from
a methodological process that includes stakeholder per-
spectives.
•A microservices-based architecture that is capable of
supporting clinical processes related to the treatment
and monitoring of clinical patients.
•The identification of eight quality attributes required by
stakeholders to characterize oncology EHR.
•The characterization of the main clinical variables to
record the process of treatment and monitoring of cancer
patients in an EHR.
•The identification of the relevant actors in the treatment
and monitoring of cancer patients in Chile.
•The description of key clinical processes related to
the treatment and monitoring of people with cancer is
necessary for the management of health centers through
an EHR.
The remainder of this paper is structured as follows:
Section II describes related work; Section III details the
methodology used in this study; Section IV shows the results;
Section V describes the design of the oncology EHR; Section
VI details the discussion; And Section VII describes the
conclusions of the study.
II. RELATED WORK
Several studies have reported research related to cancer reg-
istries in different countries. Some studies have described the
experience of using and implementing integrated software
systems to assess and monitor cancer patients in countries
such as China [11], Nigeria [12], Iran [13], Denmark [14],
North America [15], Egypt [16], Japan [17], Malaysia [18]
and Ukraine [19]. The common denominator of these pro-
posals is that the use of interoperability and both national
and international standards for cancer patient registration
is relevant for successful cancer registration systems. Al-
though each country reports evidence based on its population
and culture, these studies converge on the critical need for
software systems that assist in managing the treatment and
monitoring of cancer patients and in making early decisions.
Duggan et al. [20] discuss the US National Cancer Insti-
tute’s Surveillance, Epidemiology and End Results (SEER)
program. The authors noted that approaches to cancer
surveillance are evolving from enumerating the development
of cancers by organ location in populations to monitoring
the occurrence of cancers by histopathological and molecular
subtypes, which opens up new possibilities for clinical re-
search. In turn, the authors conducted a review that aimed to
provide a brief overview of SEER and highlight opportunities
and challenges for pathologists to benefit from and enhance
the value of SEER data.
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Bianconi et al. [21] propose a management system for
the Umbria Cancer Registry (S.G.RTUP) based on AM-
PAX technology (Apache, Mysql, PHP, Ajax and XML)
and object-oriented programming following the ISO/IEC
27001:2005 standard to guarantee the security of access to
information. In addition, the authors defined and charac-
terized a modular and extensible architecture. Furthermore,
the location, topology, morphology, and behavior of cancer
were described according to the International Classification
of Diseases.
Pardamean et al. [22] describe the implementation of
CANREG 5, which is a oncology EHR software used in
Indonesia. The authors used empirical research methods and
validated their approach in two cancer hospitals: the National
Cancer Center (NCC) and the Cancer Registration Center
(HCRC). To develop and deploy the proposal, the authors
propose three phases: analysis of current technology, imple-
mentation, and system testing.
In terms of oncology EHR design challenges, Kecha-
gioglou [23] mentioned that there are several challenges
related to the collection of data generated by oncology EHRs.
These challenges mainly point to linking the data to create
structured and meaningful databases that are able to represent
the general population, are unbiased, and are of good quality
in order to draw meaningful conclusions. On the other hand,
Strachna et al. [24] reported that remote monitoring programs
based on the collection of patient-reported outcome data are
increasingly being adopted in oncology clinical processes.
This implies that when designing and implementing oncol-
ogy EHRs, a module or component should be considered
that allows alerts to be warned when an oncology patient
experiences adverse events.
Other initiatives proposed by corporations such as Inter-
national Agency for Research on Cancer (IARC1) , Euro-
pean Network of Cancer Registries (ENCR2), Spanish Net-
work of Cancer Registries (REDECAN3) and Australasian
Association of Cancer Registries (AACR4) aim to propose
standardized information systems whose main function is to
register cancer patients using interoperable data formats to
share information between national health institutions.
The proposals described in this section demonstrate the
benefits of oncology EHR systems for oncology patients.
Each study addressed the development and implementation
of software systems to register cancer patients in different
countries. Our study aims to expand the body of knowledge
on electronic cancer registries by describing the experience
of designing clinical cancer registries in Chile. In addition,
our study use systematic techniques to design software based
on stakeholder satisfaction and the systemic properties repre-
sented by quality attributes.
1https://www.iarc.who.int
2https://www.encr.eu
3https://redecan.org/en
4https://ghdx.healthdata.org/organizations/australasian-association-
cancer-registries
III. METHODS
A. MOTIVATION
Like other countries, Chile has undergone a significant
change in its population structure, and unhealthy behaviors
and lifestyle habits have had an impact on the increase in
morbidity and mortality from non-communicable diseases,
both acute and chronic. Within the latter, cardiovascular
diseases and cancer have been identified as the first and
second leading causes of death [25]. In terms of mortality
projections, more people die from cancer every year, and it
is expected that by 2023, cancer will be the leading cause of
death in the country (see Figure 1).
FIGURE 1. Cancer and cardiovascular disease mortality rates between 2008
and 2020 in Chile [25]
In this respect, the Chilean health system must first have
promotion strategies aimed at a healthy population and
prevention strategies appropriate to the local epidemiology,
which provide affected individuals and families with timely
and quality management. Even more so if one considers that
around 40% of cancers are related to unhealthy lifestyles
and modifiable risk factors, such as tobacco consumption
and exposure to tobacco smoke, obesity, alcohol consump-
tion, exposure to toxic substances and agents. These factors
are common to other chronic diseases and are, therefore,
amenable to common coping strategies. In this context, it
is of utmost importance to strengthen the monitoring and
treatment of cancer in the health system at the local level,
both in the promotion of protective factors and self-care of
the population, in order to favor healthy lifestyles, and in the
protection of the environment, protecting the population from
external agents that cause or could cause health problems
[26].
In 2011, the Chilean government launched the National
Health Strategy 2011-2020, which defined nine strategic
objectives for the decade, including cancer monitoring and
treatment, with the intention of making the strategy sustain-
able over time and guaranteeing a focus on national health
actions with an intersectoral approach and a budget that sup-
ports the proposed objectives and goals. For the period 2021-
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2030, the lessons learned from the first period are being used
to improve the proposed new strategy, which will focus on a
more direct approach to cancer patients. One of the lessons
learned is to identify the variables that are related to the
suspicion of diagnosis, treatment, and monitoring of patients
with cancer. This involves the collection of data directly from
existing electronic clinical records in Chile, whether primary,
secondary, or tertiary care, through coding and integration in
compliance with international standards. Only in those cases
where these records are not available in health centers will we
propose the entry of data into the treatment and monitoring
registry module for cancer patients. Therefore, our study
focused on systematically designing a system that allows the
process of registering the treatment and monitoring of cancer
patients to be performed, considering the definition of the set
of key variables, responsible actors, and registration events
inspired on national and international practices, such as min-
imally invasive image-guided procedures [27], expansion in
the depth and variety of databases [28], and others.
B. RESEARCH OBJECTIVES AND QUESTIONS
An overview of our study is shown in Figure 2. We identified
stakeholders and requirements to characterize (i) oncological
clinical variables, (ii) clinical processes related to oncolog-
ical treatment and monitoring, and (iii) potential properties
that oncological EHR should have. Subsequently, we used
the information obtained to define and propose the design
of oncological EHR. We also describe the technologies that
will be used to implement oncological EHR. Finally, we will
proceed with the development and deployment of oncology
EHR. Because this last step considers several standardized
activities, coding, processes, and tests, it will not be ad-
dressed in this study.
Our research objective is twofold. Clinically, we aim to
identify and characterize the clinical variables that allow
us to treat and monitor oncology patients, as well as the
clinical processes that enable the above. Additionally, we
aim to identify milestones that allow for reconstruction of
the patient path, specifically at the treatment and monitoring
stages. On the other hand, concerning the design of oncology
EHR, we aim to describe the quality attributes that define the
main characteristics that oncology EHR must have to enable
the treatment and monitoring of patients. Consequently, the
research questions are as follows:
•Which clinical variables define and characterize the
treatment and monitoring of cancer patients? Rationale:
This research question aims to systematize the treatment
and monitoring of cancer patients through the identifica-
tion of clinical, social, and demographic variables that
will be considered in the oncology EHR.
•Which clinical processes characterize the treatment and
monitoring of cancer patients? Rationale: The goal of
this research question is to identify the relevant clinical
processes that should be implemented in the oncology
EHR, whose mission is to address events related to the
notification of health institutions regarding the treatment
and monitoring of cancer patients.
•Which systemic properties should be satisfied in the
registry to treat and monitor patients with cancer?
Rationale: This research question aims to identify the
systemic qualities a oncology EHR should have to sat-
isfy the needs of the different stakeholders involved in
treating and monitoring cancer patients.
C. STAKEHOLDER AND REQUIREMENTS
IDENTIFICATION
Identifying the needs and requirements of different stake-
holders in a system is key to understanding the system’s
different views and expectations. Properly identifying re-
quirements can influence the success or failure of a project.
Consequently, if requirement identification is conducted in-
correctly, it can lead to clinicians’ rejection of the system
as well as poor software development management. Studies
such as [29] [30] claim that incorrect requirement identi-
fication causes clinical software to fail to meet the needs
of stakeholders and, consequently, not to be considered in
clinical processes. Given that the clinical care of oncology
patients in Chile considers both the government and social
operations, identifying and capturing meaningful require-
ments related to oncology EHRs is a critical task. Therefore,
we designed a clinical study oriented towards intra-method
triangulation [31] (see Figure 3), based on two mutually
nurturing techniques, namely focus group identification and
in-depth interviews.
This design allows us to obtain relevant and strategic
information to design a system that addresses all the view-
points described by the stakeholders. In addition, we used
health implementation science techniques [32] [33] to iden-
tify evidence-based methods for implementing clinical in-
terventions in oncology patients. Health implementation sci-
ences focus on bridging the gap between research and clinical
practice with the aim of promoting the effective adoption
of evidence-based interventions in healthcare settings. These
sciences offer approaches and methodologies to facilitate
consideration of patient and stakeholder requirements during
the implementation of health interventions. Consequently,
we used the following implementation strategies [32] in our
study:
•Capture and share local knowledge: It aims to elicit
knowledge from the places where it is implemented
and how implementers and clinicians do their work and
share it with their peers.
•Conduct local consensus discussion: Suppliers and
stakeholders are included in discussions that address
issues affecting clinical process innovation.
•Involve executive boards: Involve government structures
and institutions in process implementation efforts.
•Involve patients/consumers and family members: En-
courage or include patients, consumers, and family
members in process implementation efforts.
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FIGURE 2. Overview of our study
FIGURE 3. Intramethod triangulation
•Obtain and use patients/consumers and family feedback:
Develop strategies to increase patient, consumer, and
family feedback on process implementation.
The activities to obtain requirements focused on ten types
of stakeholders, who signed an informed consent document
validated by the Scientific Ethics Committee of the Chilean
Ministry of Health. Table 1 presents the stakeholder profiles.
1) Focus group
To execute the focus group technique, we constructed a
list of relevant representatives per profile and created five
focus groups, in which at least one representative was ran-
domly selected from each group. Each focus group had a
weekly meeting lasting approximately 90 min for two weeks.
The meetings included participants, a professional moderator
trained in qualitative techniques, faithful witness, and on-
cology EHR expert. In addition, the meetings had an initial
stimulus and thematic guidelines to facilitate dialogue and
group listening. All meetings were conducted using a digital
platform due to access and socio-sanitary conditions.
This technique assumes a dynamic and flexible structure in
its application as it seeks a conversational process to generate
information, and its objective is to bring together the main
stakeholders to identify and analyze the primary needs to be
addressed by the system.
In this activity, we conducted a preliminary survey to
obtain the following information:
•The processes (internal/external) involved in cancer
treatment, both in the public and private sector.
•The specific needs of key users and stakeholders.
•The applicable/current norms, protocols, ethical issues,
regulations and standards for cancer treatment registra-
tion.
•International policies and best practices for cancer reg-
istries and registrars.
•Definition of functional and non-functional require-
ments of the cancer treatment registry.
Appendix B describes the questions asked in the focus
group.
2) Interviews
In-depth interviews provide the possibility of studying the
discursive trajectories of stakeholders to complement the
information obtained in the focus groups. To conduct the
interviews, we selected a relevant group of stakeholders
based on the following criteria:
•Widely acknowledged national or international refer-
ences/experts.
•Stakeholders who participated in the focus groups
and/or made relevant proposals in the previous stage.
The interviews lasted 60–90 minutes to deepen the com-
ponents addressed in the focus groups to obtain informa-
tion. Thirteen interviews were conducted with key actors
and experts from stakeholders’ profiles. The initial guideline
presents semi-structured interviews with questions aimed at
identifying new elements and deepening those identified in
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TABLE 1. Description of the main stakeholders of the oncology EHR
Profile Description
Health Authority Representatives of the official institutions in charge of directing the health system at the national,
intermediate, and local levels, with expertise in the areas of population-based cancer registries, among
others.
Clinical Experts in Oncologi-
cal Treatment
Clinical staff with at least five years of work experience in the area, who develop their professional
practice in the treatment of neoplastic processes, both in the diagnostic suspicion, admission, monitor-
ing, and completion of treatment.
Staff related to Care Manage-
ment
Professionals with at least three years of experience in the area who work in the management of
patients affected by oncological pathologies, particularly in the administrative processes of admission,
the trajectory of people, and their treatment.
International Cancer Referrals The experience with international referrals provides a global perspective on the necessary aspects to be
integrated into a cancer treatment registry.
Scientific Society Representa-
tives
Members of scientific societies are involved in the fields of medicine/public health and cancer. The
participation of these societies will enrich the registry, as they develop comprehensive views in terms
of research and social value in this type of issue.
Representatives of Oncology
Patient Societies or Groups
The participation of these groups will favor the integration of elements from the experiences and
meanings of the families in relation to this type of pathology.
Director of Oncology Ser-
vices and/or Deputy Medical
Director of Health Centres
The experience of directing oncology services or highly complex care centers is relevant given
the overall management of waiting lists, inclusion of patients in the treatment process, resource
management, and coordination at the level of clinical units, health facilities, and health authorities.
Expert in Health Economics Professional in public health and/or health management, who develop analytical lines involving health
economics. Including a health expert economics perspective will favor the inclusion of a perspective on
the importance of having a cancer treatment registry based on cost-effectiveness analyses and the social
relevance of this clinical/administrative management tool.
Reference person from the In-
stitute of Public Health of
Chile
Professional members of the Institute of Public Health know the expectations, experiences, and analysis
of the treatment of patients with cancer. In this regard, at least one professional from the National
Medicines Agency with expertise in pharmacological treatment of cancer patients is expected to
participate.
Representatives of Pharma-
ceutical Associations
Professionals have extensive experience in the pharmaceutical industry at national and international
levels, particularly in the management of cancer and in accessing the population.
focus groups. In the interviews, we addressed the following
topics.
•General relevance of national cancer treatment and
monitoring registry.
•Registry variables.
•Impacts of the national cancer treatment registry.
•Facilitators and barriers to the implementation of a
national cancer treatment registry.
•Personnel in charge of the registry.
•Integration with other systems.
Appendix C describes the questions asked in the inter-
views.
D. ATTRIBUTE DRIVEN DESIGN
Because several actors and stakeholders are related to our
proposal, the software architecture and selection of appro-
priate technologies become key artifacts for a successful and
quality oncology EHR.
Although software development methodologies have well-
defined phases that allow a system to be built, software
architecture groups the design decisions that allow a system
to respond to stakeholders’ needs [34]. From a software
perspective, quality is related to the satisfaction of require-
ments that point to the systemic properties of the software,
such as availability, security, and scalability. In most cases,
the qualities that a system must possess are described in
terms of the extra-functional requirements. These require-
ments describe how a system must satisfy the needs of its
users and stakeholders [35]. Moreover, these requirements
describe the system constraints (e.g., security, availability,
and scalability).
Given that each stakeholder has different aspirations re-
garding these properties (for example, software security for a
physician is different from that for a cancer patient’s family
member), it is necessary to use methodologies that bring
together different stakeholder views to define the software
architecture that will be part of the oncology EHR develop-
ment process. If we omit different stakeholder perspectives,
the software architecture may not adequately meet the needs
and objectives of the business. On the other hand, from a
clinical point of view, a poorly designed software architecture
can lead to resistance to change by those who feel excluded
or disregarded. This can lead to conflict, lack of acceptance
of the system, and difficulties in the implementation and
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adoption of software. Therefore, we used Attribute-Driven
Design (ADD) methodology (see Figure 4) to define the
architecture of the oncology EHR [36].
FIGURE 4. The Attribute-Driven Design method [36]
ADD is a software architecture design method that pro-
vides steps for designing software systems over a series of
iterations. It focuses on satisfying the quality attributes by
selecting and instantiating different types of structures. The
inputs to this process are summarized as follows:
•Design purposes describe the design intent to be
achieved in the system.
•Primary functional requirements are those functionali-
ties that the system must provide.
•Quality attribute scenarios are specifications that de-
scribe and detail how and where system properties will
be satisfied.
•Constraints are software decisions with little control
over the design (e.g., governmental constraints).
•Architectural concerns are more general issues that the
system must address. These issues generally point to
technologies and software specifications.
With the inputs already established, ADD executes seven
steps that allow the iterative design of a software architecture
considering the different dimensions described in the inputs
(Appendix A details the steps of ADD). Each step has its own
complexity and corresponding internal processes. As a result,
the ADD generates an output corresponding to the software
architecture design that is used in the subsequent phases of
software development.
ADD also allows for the definition of scenarios that en-
able the development and implementation of software. The
quality attributes obtained by the ADD define the drivers of
the software architecture of the system. These drivers are
based on design decisions that will be implemented in the
system, either as architectural patterns or through the use of
technologies. Architectural patterns are systematic solutions
to recurring problems in software design [9]. These patterns
help represent software design and guidelines for selecting
the technologies that implement them.
IV. RESULTS
A. VARIABLES FOR TREATING AND MONITORING
ONCOLOGICAL PATIENTS
We identified 19 relevant stakeholder requirements from fo-
cus groups and interviews. Although the list of requirements
is generally extensive, we identified the requirements that are
essential for developing and implementing the national on-
cology EHR. The details of these requirements are presented
in Appendix D.
Regarding requirements, stakeholders emphasize that the
system should contain a cancer treatment-only module to
identify potentially ill patients. In addition, stakeholders need
to have a history of changes in cancer patient treatment and
monitoring records.
On the other hand, stakeholders mentioned that including
clinical staff in the system is relevant and strategic for access-
ing patient characterization data and their respective histori-
cal information. Similarly, clinical staff should have access to
download patient information anywhere in the country, and
should be empowered to extend the clinical characteristics of
the patient if necessary.
From quantitative and qualitative points of view, it is
important for stakeholders to have an analysis module that
allows them to make decisions regarding the treatment and
monitoring of patients. This information is relevant, as it
allows them to make indicators, reports, and patient risk
maps, as well as to apply data science to the information.
From a clinical point of view, stakeholders expressed that
it is essential to systematize, under the framework of social
determinants of health, a demographic characterization of
cancer patients to guide the production of better health indi-
cators. The data relevant for this purpose and those identified
by the stakeholders are as follows:
•Sex (registered at birth)
•Gender
•Date of birth
•Age at cancer diagnosis
•Date of death
•State
•County
•Nationality
•Social priority index
•Type of housing (rural or urban)
•Ethnicity
•Religious belief
•Level of school education
•Occupation
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•Occupational exposure
•Health insurance
•Existence or non-existence of supplementary insurance
•Risk factors and access to health centres
•Type of cancer
•Date of diagnosis
•Type of institution in diagnosis, treatment and monitor-
ing
•Type of treatment
•Date of indication for treatment
•Name and dose of drug
•Weight
•Size
The data described above not only allow for the charac-
terization of the demographics of cancer patients but also
for the standardization of therapeutic strategies. Therefore,
stakeholders also request that the national oncology EHR be
able to recommend data and information on three aspects
relevant to the monitoring of patients with cancer:
•Type of treatment and timing: This need points to the
therapeutic intention according to the type of cancer and
intervention advised for the patient’s health status. This
information, which comes from the clinical resolution
stage of the oncology EHR, will make it possible to
characterize the institution of origin, diagnosis, access
to therapies, their sequence, and the start/end times for
each of them.
•Origin of patient referral: This functionality refers to
registering the care centers involved in the different
therapeutic strategies for access to treatment for people
with cancer.
•Registration of medication and dosage: This need points
to information on the medication used in cancer patients.
Therefore, it is proposed that each medicine’s generic
name or active ingredient be registered, as well as the
dosage indicated by the specialist, to establish a relation-
ship with the treatment cycles. In addition, stakeholders
express the need for a drug database to acquire more
and better data for monitoring national policies, health
management, and efficiency of public resources.
Stakeholders also mentioned the need to incorporate mon-
itoring information into the registry. Currently, in Chile,
the monitoring of patients with cancer is the responsibility
of secondary and tertiary care to monitor possible compli-
cations of the disease (metastasis, thrombosis, dysphagia,
etc.) and treatment (myopathies, neuropathies, others). One
of Chile’s significant public health priorities is to make
patient registration compatible between public and private
systems and between the different levels of care provided by
clinical institutions. In this regard, it is essential to identify
monitoring strategies according to the type of institution,
interventions performed, and information integration. This
monitoring should include criteria related to current indi-
cators of the quality of healthcare provision, evaluation of
care, and management, considering the minimum variables
collected at the international level to compare the evolution
of this type of disease and their treatments with those of other
countries.
B. CLINICAL PROCESSES
Although the oncology EHR encompasses several types of
clinical processes, we identified two critical processes for
stakeholders: suspicion of a patient with cancer (see Figure
5) and the staging and treatment process (see Figure 6).
The suspicion process spans from receiving a suspected
cancer diagnosis to the histological confirmation of cancer
and the clinical notification of the patient for their diagnosis.
The process begins when the treating physician receives a
patient with a suspected cancer diagnosis from a non-cancer
care center. If the patient’s data do not contain sufficient
biopsy results or history for diagnosis or require new de-
tails, the process continues with the Anatomical Pathology
department. Otherwise, if the patient’s data come with the
biopsy or the patient is not susceptible to analysis, the process
continues with the Preparation Committee. The physician
prepares the patient’s presentation to the oncology commit-
tee, organizing the available background for diagnostic con-
firmation, staging, and treatment resolution. Finally, during
the medical consultation, the physician notifies the patient of
his or her cancer diagnosis (whether suspected, histological,
or cytological) and his or her future presentation to the
committee.
The physician will then refer the case to the Committee
until the Committee’s therapeutic decision, including can-
cer staging. During this process, the physician determines
whether tests are required for cancer staging. For this, the
physician may consider: (i) not requiring tests, as the patient
has arrived with a history from another health center; (ii)
requiring laboratory or imaging tests to complement the
histological diagnosis provided by the pathological anatomy
for tumor cancer; (iii) requiring laboratory or imaging tests
to complement the cytological diagnosis provided by the
laboratory for non-tumor cancer; or (iv) requiring laboratory
or imaging tests to provide a history for patients who cannot
undergo a biopsy. Subsequently, the physician incorporates
the patient’s history, which is necessary for the Committee’s
evaluation, and requests the patient’s review.
The oncology committee analyzes the medical history and
determines whether a therapeutic decision can be made. If
necessary, the histological diagnosis is updated. In case of
insufficient background information, the treating physician
is requested to order further examinations before the ther-
apeutic decision is made. After the therapeutic decision,
the patient may undergo one or more treatments and be
monitored by a physician.
Monitoring can be (i) during a treatment, (ii) after com-
pletion of one of several treatments assigned to the patient,
or (ii) after completion of the last treatment. If the treating
physician identifies the need to present the patient to the com-
mittee, he or she will continue with Committee Preparation.
Otherwise, if the patient has any remaining treatment, he or
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FIGURE 5. The suspicion diagnosis process
FIGURE 6. The staging and treatment process
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she will return for a new check-up. If no more treatments
are left, and the patient does not need to be evaluated by
the committee, the patient will undergo strict oncological
monitoring.
C. QUALITY ATTRIBUTES
Stakeholders mentioned different types of needs and qualities
of the national oncology EHR. Consequently, we identified
14 extra-functional requirements characterized by eight qual-
ity attributes (based on ISO 25010 [37]) as follows:
•Compatibility: Stakeholders expressed significant con-
cern regarding the interoperability and coexistence of
data. From an operational and clinical point of view,
it is relevant that data can be communicated between
different systems.
•Reliability: Regarding this attribute, stakeholders men-
tioned that the system must have a robust ability to
be fault tolerant because, if data is unavailable, it can
compromise the quality of patient care.
•Security: This attribute was the most important for
stakeholders. Privacy, confidentiality, accountability,
non-repudiation, and authenticity are imperative qual-
ities of the clinical record. Additionally, the Chilean
Ministry of Health’s security policies require all clinical
information systems to have security standards.
•Performance: For the stakeholder, the system must per-
form optimally at certain moments of high workflow,
specifically in creating reports and patient monitoring.
•Maintainability: From the point of view of adapting to
new requirements, the stakeholders requested that the
system should be modular in order to be able to add
modules whenever a new need is required.
•Usability: Given that the national oncology EHR will
be used by a variety of users with different profiles and
technical knowledge, it is essential for stakeholders that
the system has a policy of protection against user errors,
as well as a minimalist and functional aesthetic.
•Portability: It is important to stakeholders that the
system can be used on different operating systems,
browsers, and mobile devices.
•Interoperability: Patients’ clinical data must be ex-
changed between different clinical processes while
maintaining the integrity and availability of information.
V. DESIGN OVERVIEW
We used the answers to the research questions as inputs
to define the high-level design of the oncology EHR. To
describe the design, it is important to select the most relevant
actors in the oncology EHR from stakeholders. Additionally,
the second research question provided background informa-
tion on the most important modules that the oncology EHR
should have. Finally, the ADD methodology revealed the
potential architecture of cancer registries. Figure 7 presents
an overview of the proposed system.
The main actors in the oncology EHR and its modules are
described as follows.
•Physician: This actor can view, record and edit the
information of patients under their care.
•Nurse: This actor has the same powers as the Physician
actor, as long as it is pre-authorised by the correspond-
ing physician.
•Healthcare Professional: This actor has the same at-
tributes as the Nurse actor, also requiring prior autho-
risation from the Physician actor. This user can be an
external professional who is not directly related to the
patient but focuses on data recording.
•MINSAL (Chilean Ministry of Health): This actor has a
central role which allows him/her to have access to the
information of all patients, without being able to edit the
record, and to the analysis module.
Consequently, the modules of the oncology EHR are as
follows:
•Treatment Module: This module allows the entry of the
treatment associated with the patients registered in the
oncology EHR and the monitoring carried out during
this period. Different treatments may be entered manu-
ally by platform users or obtained through interoperabil-
ity with external sources or other MINSAL systems.
•Monitoring Module: This module allows the entry of
monitoring actions performed on patients registered in
the oncology EHR after the completion of their treat-
ments in order to verify the results, side effects and
general health status of the patient. Different actions
must be entered manually by platform users.
•Characterisation Module: This module allows extending
the information of patients registered in the oncology
EHR, with the aim of having data that detect those
factors that are relevant to the impact of patients’ health,
such as, for example, social determinants.
•Analysis Module: This module allows the generation
of indicators and valuable information from monitoring
data, demographic data and the epidemiological char-
acterization of patients. Among the functionalities to be
incorporated are different types of data analysis (surveil-
lance indicators, care/management evaluation, survival
analysis, and social determinants) and the generation of
reports, dashboards, and risk maps.
Table 2 summarizes the operationalization of the design
for the implementation of oncology EHR. Broadly speaking,
we used a technology stack based on Spring Boot5and
Angular6to implement most of the attributes. Some of these
quality attributes are implemented in patterns, such as the
Circuit Breaker pattern. Although the pattern describes an
overview of the solution to be used, it will be implemented
using Spring Boot technology. In contrast, the predominant
architecture style in our oncology EHR is the microservice
architecture style [39] [41]. Microservices architecture is an
architectural style that structures an application as a set of
independent and autonomous services. Each service focuses
5https://spring.io
6https://angular.io
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FIGURE 7. High-level design of oncology EHR system
TABLE 2. Decisions and implementation of quality attributes
Quality
attribute
Decision Architectural
pattern/technology
Rationale
Compatibility Architecture with independent
modules
Spring boot Application development in the Java language is
required
Reliability Prevent a system from con-
stantly trying to execute an op-
eration that tends to fail
Circuit Breaker pattern
[38]
This pattern detects faults and encapsulates the logic
to prevent faults
Security Use authorization and authenti-
cation mechanisms. In addition,
data must be protected
Spring boot security This Spring boot component provides robust secu-
rity libraries to the back-end
Performance Acceptable clinical consulta-
tion time in the oncology EHR
Using indexes in
databases
Adjustments to the database and queries are re-
quired, applying the necessary indexes
Maintainability Architecture with independent
modules
Microservices architec-
ture [39]
Stand-alone backend applications are required
Usability System error handling Angular and Angular
Material
Angular Material technologies offer front-end li-
braries that users widely accept
Portability Use of the system on different
platforms and browsers
Angular Angular technology supports multiple web browsers
Interoperability Use clinical data exchange stan-
dard
HL7 and FHIR [40] HL7 (Health Level Seven) is a set of standards that
facilitate the electronic exchange of clinical informa-
tion. On the other hand, Fast Healthcare Interoper-
ability Resources (FHIR) define a set of resources
that represent granular clinical concepts.
on a specific functionality of the system and can be individ-
ually developed, deployed, and scaled. Instead of building a
monolithic application, where all functionality is contained in
a single block of code, the microservice architecture divides
the application into smaller cohesive services. These services
communicate with each other through well-defined inter-
faces, such as Application Programming Interfaces (APIs),
to perform complex tasks.
Our design also considered the ability to exchange, inter-
pret, and use patient oncology data effectively. Therefore,
we consider HL7 (Health Level Seven) and Fast Health-
care Interoperability Resources (FHIR) in the interoperability
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component. HL7 is a set of international standards for the
exchange of clinical and administrative information in health
care systems. These standards facilitate communication and
interoperability between different healthcare systems and
applications, allowing data to be shared securely and con-
sistently. HL7 defines a set of messages, structures, and
protocols that specify how health data should be exchanged
[40]. These standards cover a wide range of areas such as
electronic health records, appointment management, labora-
tory management, and billing. In addition, HL7 provides a
framework for the development of interfaces and integration
of health information systems. On the other hand, FHIR is
a standard for clinical data interoperability that is based on
modern web principles and uses data exchange formats such
as JSON and XML [42]. FHIR was developed with the aim
of being easier to implement and use than the previous HL7
standards. FHIR focuses on resources that represent logical
units of clinical information, such as patients, appointments,
medications, and laboratory results. These resources can be
exchanged individually and combined to form more complex
documents or messages. It is worth mentioning that the qual-
ity attributes of compatibility, performance, and portability
are not described in Figure 7, as they are qualities that are
implemented in the oncology registry programming code.
The microservice-based design proposed in our study
opens up the possibility of including emerging techniques
and technologies to obtain the maximum value from the data
managed by the oncology EHR. According to studies such
as [43] [44], artificial intelligence can be a great ally for the
detection of different types of cancers, such as breast cancer.
The techniques used in artificial intelligence to classify and
predict data are relevant for supporting medical decision-
making. The oncology EHR is designed to have large datasets
in the form of images and health records. With artificial
intelligence, the system may be able to analyze such data to
discover patterns and relevant information that even a team
of highly skilled clinicians would not be able to detect. Our
previous studies on data analysis using artificial intelligence
[45] provided us with guidelines for including data classifi-
cation and prognostication techniques in oncology EHR.
A. VALIDATION
We conducted a pilot plan for the treatment registry and
monitoring of cancer patients, focusing preferably on breast
cancer, highlighting the development of a pilot that includes
clinical pathways, divided by treatment, with the aim of mov-
ing towards a comprehensive and integrated development of
health policies in Chile. Thus, oncology EHR views related
to patient characterization, oncology treatment entry, and
patient monitoring have been deployed. In this pilot study, we
gathered critical stakeholders to evaluate the functionalities
and qualities of oncology EHRs through acceptance testing
of the main functionalities. Given the good results obtained
in the pilot study and based on our analysis of stakeholder
feedback, we plan to expand the pilot experience to six
additional cancer types: breast, lung, cervical, colon, gastric,
prostate, and leukemia (if we add children and adolescents).
B. LIMITATIONS
The main limitation of our proposal is that it aims to define
specific views on cancer types. According to feedback from
users and stakeholders, it is necessary to have specific infor-
mation on different types of cancer, as each type of cancer
requires specific treatment and monitoring decisions. This
requirement can make the oncology EHR a complex system
as each cancer has its own way of being treated. On the
other hand, another limitation we identified in the study is
the identification of who is responsible for the registry, that is,
who will take responsibility for entering the data and follow-
ing the patient’s progress. In our proposal, the physician de-
fines the clinical actions regarding treatment; however, since
monitoring is not a medical responsibility, care management
professionals (e.g., nurses) must take responsibility. Given
this scenario, the system must have specific functionalities
and views that can be used by professionals when monitoring
patients.
VI. DISCUSSION
The experiences we gathered with the implementation of the
oncology EHR reveal that it is important for the treatment
and monitoring of cancer patients to identify and charac-
terize who is responsible for the monitoring. With regard
to our study, we identified that the physician (and the cor-
responding team) is essential for the oncology EHR to be
successful for patients, as the physician must account for
interventions, strategies by institution, characterization of the
health provider according to the population and portfolio, and
integration with other databases. Since the oncology EHR
uses HL7 standards, the data added by physicians are used by
various institutions that study cancer in Chile. They are also
used to create new and better-quality indicators for patients
with cancer.
On the other hand, the proposed oncology EHR has served
as a mechanism to integrate different institutions that con-
tribute data with the aim of extending the potential of the
oncology EHR by extracting and exchanging a subset of
records to which they can add new variables to be observed.
This will allow the oncology EHR to be used as an initial
source of cases to allow the system to evolve towards the
registration of specific aspects of other varieties of cancer and
for the development of cancer-related research, enhancing
the significant contribution of knowledge both at the level
of novel treatment proposals and for the validation of already
developed treatments that require a patient base with well-
defined characteristics.
According to the feedback gathered from users and stake-
holders who have used the oncology EHR, our proposal has
great potential in terms of creating indicators to measure the
impact of cancer in Chile. Feedback suggests that the oncol-
ogy EHR can act as a producer of inputs for various outcomes
related to the completeness of cases or the completeness
and accuracy of the details of cancer patients in Chile. In
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other words, in the opinion of stakeholders, the dimension
of treatment and monitoring provided by the oncology EHR
includes criteria related to minimum variables proposed at
the international level, with the purpose of comparing the
evolution of cancer and its treatment in other countries.
From the perspective of oncology EHR development and
deployment, using a methodology focused on system prop-
erties and stakeholder needs allowed us to better manage
expectations about the system. Given that the need to create
a oncology EHR is relevant to health services in Chile,
each relevant stakeholder has different needs and aspirations.
These must be reflected in the system; therefore, using fa-
miliar software development processes is not sufficient. The
ADD methodology allows us to identify the main stakeholder
needs early and translate these needs into quality attributes.
Using the steps of the methodology, we were able to char-
acterize and describe the main stakeholder needs through
quality attributes to select technologies and patterns in a more
informed and systematic way. Thus, we created a common
vision of the system among stakeholders based on a software
architecture that primarily meets the needs of all stakeholders
involved in cancer monitoring and treatment.
VII. CONCLUSIONS
In this study, we proposed a national electronic oncology
EHR to treat and monitor patients with cancer in Chile. By
systematically identifying relevant variables for the treatment
and monitoring of patients, we identified a set of variables
that allow us to fulfill the different needs expressed by stake-
holders that aim to provide quality patient care. On the other
hand, to build an electronic registry that meets stakeholders’
expectations, we used a systematic approach to design the
software architecture of the registry to satisfy stakeholders’
concerns and thus conduct appropriate development of the
registry. As a result, we identified twenty-six variables crit-
ical to the treatment and monitoring of cancer patients. In
addition, we identified two clinical processes relevant to the
stakeholders that the oncology EHR should consider. Finally,
we identified eight systemic properties that the oncology
EHR must satisfy to provide quality care for patients and
families.
To further our research, we will proceed to explore the
data collected by the registry with the aim of implementing
tools for data visualization and mining by analyzing the
information collected by the oncology EHR. More precisely,
we will proceed to study the needs of different actors in
the public sector to take advantage of the information in
the registry through information views with different levels
of grouping according to their needs and the possibility of
exporting (anonymous) data for more specific requirements
that institutions can use for their own research purposes.
ACKNOWLEDGMENTS
We want thanks Millennium Nucleus on Sociomedicine
(ANID - MILENIO - NCS2021_013) and we thank the Cen-
tro Nacional en Sistemas de Información en Salud (CENS).
.
APPENDIX A THE ATTRIBUTE DRIVEN DESIGN STEPS
The ADD steps [36] are described as follows:
•Step 1 - Review inputs: The architect reviews the inputs
provided, including the requirements, constraints, and
stakeholder concerns. These inputs allow architects to
understand the context of the system and its desired
outcomes.
•Step 2 - Establish iteration goal by selection drivers:
The architect identifies and selects the key drivers that
guide design iterations. These drivers are often quality
attributes that are critical to the success of a system.
•Step 3 - Choose one or more elements of the system to
refine: The architect identifies elements of the system
that require further refinement to address the selected
drivers. Often, these elements are specific components,
modules, or features that play an important role in
achieving the desired quality attributes. At this point, it
is important to identify key stakeholders to discuss the
critical elements of the system.
•Step 4 - Choose one or more design concepts that satisfy
the selected drivers: In this step, the architect generates
and evaluates the design concepts that respond to the
selected drivers. The different views that the system has
(e.g., physical view, infrastructure view, logical view)
are inputs for the architect to make decisions.
•Step 5 - Instantiate architectural elements, allocate re-
sponsibilities, and define interfaces: An architect instan-
tiates the chosen design concepts by assigning them to
specific architectural elements.
•Step 6 - Sketch views and record design decisions:
The architect creates specific architectural views, such
as component diagrams, deployment diagrams, or se-
quence diagrams, to illustrate the structure and behavior
of the system. Additionally, all design decisions made
during the process were documented, providing a clear
record of the fundamentals of the chosen design.
•Step 7 - Perform analysis of the current design and re-
view iteration goal and achievement of design purpose:
In the last step, the architect conducts an analysis of the
current design to assess its effectiveness in addressing
the selected drivers and achieving the goal of iteration.
Deviations or deficiencies are identified and adjustments
are made to refine the design and align it with the over-
all design intent. In addition, alternative scenarios are
analyzed to detect potential problems in the proposed
design.
APPENDIX B FOCUS GROUP QUESTIONS
The questions for the preliminary survey are as follows:
1) What are the main objectives of a cancer treatment
registry?
•Focus of the discussion: Participants are invited to
describe, from their point of view, the main objectives
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that a cancer treatment registry should address in
order to advance the definition of requirements (in a
general way) that a cancer treatment registry system
should have and its possible impact at the national
level. It is also expected to open the discussion on
international experiences and to learn what each par-
ticipant highlights about cancer treatment registries.
2) How can a registry respond to the proposed objectives?
•Focus of the discussion: The aim is to determine the
wishes of each participant about the cancer registry, in
order to detect early on what expectations the registry
will and will not be able to meet.
3) If we consider people starting and completing cancer
treatment, what are the main variables or criteria for a
oncology EHR?
•Focus of the discussion: Identify the main variables
that should be addressed in the implementation of a
oncology EHR.
4) What are the steps in implementing the cancer treatment
registry implementation strategy? Identifying weak-
nesses and strengths at the local level.
•Focus of the discussion: Identify different strategies
for implementing a national cancer treatment registry,
identifying local weaknesses and strengths.
5) What are the perceived barriers to and facilitators of
oncology EHR?
•Focus of the discussion: Identify the main barriers
and facilitations that need to be addressed in the
implementation of oncology EHR.
APPENDIX C LIST OF STAKEHOLDER INTERVIEW
QUESTIONS
Table 3 describes the questions we asked stakeholders.
APPENDIX D STAKEHOLDERS REQUIREMENTS
Table 4 describes the main functionalities to be performed by
oncology EHR.
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14 VOLUME 4, 2016
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content may change prior to final publication. Citation information: DOI 10.1109/ACCESS.2023.3327058
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License. For more information, see https://creativecommons.org/licenses/by-nc-nd/4.0/
Author et al.: Preparation of Papers for IEEE TRANSACTIONS and JOURNALS
TABLE 3. Table of questions asked in the interviews categorized by perspective
Perspective Questions
Importance of the cancer registry From your perspective, what is the importance of the national cancer treatment registry?
Who are the key actors or institutions in the development of the National Cancer Treatment
Registry?
Variables of the cancer registry
In your expertise, what elements should the National Cancer Treatment Registry in Chile
contain? Of these, which are essential and why?
What importance do you attach to the inclusion of variables related to social determinants?
What importance do you attach to including variables related to treatment type and timing?
What relevance do you attach to the inclusion of drugs and doses in the registry?
Impact of the cancer registry
What is the relevance of a national cancer treatment registry to the health system?
What is the relevance of a national cancer treatment registry for networking different levels of
healthcare (PHC, secondary, and tertiary care)?
What is the relevance of the national cancer treatment registry for health management and
administration?
What is the relevance of such a registry in the clinical setting (e.g., case tracking and type of
treatment)?
What is the relevance of a national cancer treatment registry for research and technology
transfers?
Barriers and facilitators In your expertise, what are the enablers of the implementation of the National Cancer Treatment
Registry?
And the barriers?
Integration From your perspective, what is the relevance of integrating the new cancer patient treatment
registry with other health information systems?
What is the feasibility of its integration with other systems?
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VOLUME 4, 2016 15
This article has been accepted for publication in IEEE Access. This is the author's version which has not been fully edited and
content may change prior to final publication. Citation information: DOI 10.1109/ACCESS.2023.3327058
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License. For more information, see https://creativecommons.org/licenses/by-nc-nd/4.0/
Author et al.: Preparation of Papers for IEEE TRANSACTIONS and JOURNALS
TABLE 4. Requirements description
Id Requirement
R1 Incorporate a new treatment module that allows the entry of data related to the treatment of patients registered in the cancer
registry.
R2 Allow the clinical user to enter data regarding the treatment of patients registered in the cancer registry by accessing different
forms that should be available for both entering and editing information.
R3 Maintain a history of changes (editing or deletion) in the patient monitoring and treatment records. This history should contain
at least the following information: (i) type of change (edit or delete), (ii) user making the change, (iii) old value (before the
change), (iv) new value (after the change), (v) date and time of the change, (vi) IP number from which the change is made, and
(vii) user agent
R4 The treatment record should incorporate the following variables: (i) treatment intention: curative or palliative; (ii) type of
treatment, divided into radiotherapy, palliative care, surgical and oncological; (iii) start date of treatment; (iv) end date of
treatment; (v) institution/provider; (vi) scheme; (vii) date of last control; (viii) date of relapse; (ix) reactions and adverse effects;
(x) toxicity; (xi) evolution; (xii) surgical milestones; (xiii) complementary medicines; and (xiv) rehabilitation.
R5 Clinicians can access patient characterization data recorded in the cancer registry and historical treatment information.
R6 Allow the clinician to download all treatment data from patients registered in the cancer registry in different formats.
R7 Incorporate a monitoring module to record post-treatment control and health status.
R8 Clinicians can enter data regarding the monitoring of patients registered in the cancer registry by accessing different forms,
which should be available for both entering and editing information.
R9 The monitoring record should incorporate the following variables: (i) treatment timing (before, in parallel, or after treatment),
(ii) symptomatic/asymptomatic, (iii) dose reduction (yes/no), (iv) tests and examinations, (v) outcome, and (vi) observation.
R10 Clinicians can access the historical monitoring information of the patients registered in the cancer registry.
R11 Allow the clinician to download all monitoring data of patients registered in the cancer registry in different formats.
R12 Extend patient data from the cancer registry by incorporating characterization variables.
R13 Enable the clinician to extend the data regarding the characterization of patients registered in the cancer registry by accessing
different forms, which should be available for both entering and editing information.
R14 Patient data should incorporate the following variables: (i) gender, (ii) type of housing, (iii) nationality, (iv) ethnicity, (v)
religious beliefs, (vi) level of schooling, (vii) occupation, (viii) occupational exposure, (ix) foresight, (x) insurance, and (xi)
access to health facilities.
R15 Consider the analysis module, which allows clinical users and decision makers to access a dashboard of relevant information
that considers the information entered in the monitoring, treatment, and characterization data modules for the generation of
indicators, and reports.
CARLA TARAMASCO received the B.Eng. de-
gree in computer engineering from the Universi-
dad de Valparaíso, Chile (1996–2001), the M.Sc.
degree in cognitive science from the Ècole Nor-
male Supèrieure (2005–2006), and the Ph.D. de-
gree (summa cum laude) from the Ècole Polytech-
nique, France (2006–2011). She is a full professor
at the Faculty of Engineering of the Andrés Bello
University and Director of the Institute of Tech-
nology for Innovation in Health and Wellbeing
(ITiSB). She is also a member of the executive committee of the National
Centre for Health Information Systems. Her main academic interests are
health and complex social systems.
CAMILO GUERRERO is Nurse from the Uni-
versity of Valparaíso and holds a Master’s degree
in Public Health from the University of Chile. He
is currently a Ph.D. student in Public Health at the
University of Chile. His research is in the field of
health inequities and timely diagnosis of cancer.
He has published papers related to health care in
several journals and conferences.
16 VOLUME 4, 2016
This article has been accepted for publication in IEEE Access. This is the author's version which has not been fully edited and
content may change prior to final publication. Citation information: DOI 10.1109/ACCESS.2023.3327058
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License. For more information, see https://creativecommons.org/licenses/by-nc-nd/4.0/
Author et al.: Preparation of Papers for IEEE TRANSACTIONS and JOURNALS
DIEGO RIVERA is a Sociologist, Master in Phi-
losophy and PhD student in Sociology. He is a re-
search secretary at the Center for Interdisciplinary
Studies in Social Theory and Subjectivity (CEI-
TESyS) at the University of Valparaíso. During
the last few years, he devoted himself to studying
the processes of subjectivation and governments
of the life of Chilean authoritarian neoliberalism.
The inputs to these research problems come from
social conflicts associated with the precariousness
of social rights, care, and algorithms, with a critical, interdisciplinary, and
oriented approach to the production of knowledge for social change.
GASTÓN MÁRQUEZ is Ph.D. in Informatics
Engineering (Federico Santa María Technical Uni-
versity, Chile). He is professor at the Bío-Bío
University, Chile. He is working in the research
fields of architectural tactics, patterns, microser-
vice architectures, technical debt, and security
in telehealth systems. He has published in sev-
eral international conferences and has participated
in international software architecture schools. He
participated as a Research Visitor at the Rochester
Institute of Technology (RIT), Rochester, NY, USA, and the Université de
Technologie de Compiègne (UTC), Compiègne, France. Before becoming a
Ph.D. student, he worked in financial companies for five years.
VOLUME 4, 2016 17
This article has been accepted for publication in IEEE Access. This is the author's version which has not been fully edited and
content may change prior to final publication. Citation information: DOI 10.1109/ACCESS.2023.3327058
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License. For more information, see https://creativecommons.org/licenses/by-nc-nd/4.0/