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Z. Evid. Fortbild. Qual. Gesundh.

wesen (ZEFQ) 123-124 (2017) 12–16

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Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ)


journal homepage: http://www.elsevier.com/locate/zefq

Special Issue / Schwerpunkt

Shared decision making in Argentina in 2017


Partizipative Entscheidungsfindung in Argentinien im Jahr 2017
Mariela Barani 1,∗ , Karin Kopitowski 1,2 , Carolina Carrara 1 , María Victoria Ruiz Yanzi 1
1
Department of Family and Community Medicine, Hospital Italiano de Buenos Aires, Argentina
2
Research Department, IUHI, Hospital Italiano de Buenos Aires, Argentina

a r t i c l e i n f o a b s t r a c t

Article History: Argentina is a high-middle income country located in Southern South America with an estimated popula-
Available online: 22 May 2017 tion of 44 million inhabitants. The epidemiological profile of the population is characterised by an increase
of non-communicable diseases. The health system is heterogeneous, fragmented and loosely integrated.
Keywords: There are no unified research agenda or government initiatives encouraging the implementation of and
shared decision making research on shared decision making (SDM). Progress has been made lately to respect patient autonomy
patient involvement through the enactment of the ‘Patients’ Rights Act’, which expressly enshrines the right of patients to get
patients’ rights information as a key element of decision-making.
implementation To our knowledge, the team at the Department of Family and Community Medicine of the Hospital
Argentina Italiano de Buenos Aires is the only one working on shared decision making in Argentina. This department
carries out research, medical undergraduate and graduate training, and clinical practice implementation
activities through strategies aimed at professionals and patients alike.
We face some challenges regarding SDM, such as: 1) the fragmentation and the heterogeneity of the
local health system; 2) we are a small group of people working on this topic who, simultaneously, have
care, management, teaching and research responsibilities; 3) we have no government support and project
funding is scarce; 4) due to the geographic location of the country, we must make a great effort in order
to attend events on the state of the art in SDM.
Given the current state of our health system, we believe the government is not likely to encourage,
implement or research on SDM in the short term. Our group will continue to work on the local initiative
and also to instil it in other interested groups.

a r t i k e l i n f o z u s a m m e n f a s s u n g

Artikel-Historie: Argentinien mit geschätzt 44 Millionen Einwohnern liegt im Süden Südamerikas und gehört zu den
Online gestellt: 22. Mai 2017 Ländern mit mittleren bis hohen Einkommen. Was die Gesundheit der Bevölkerung betrifft, so zeich-
net sich das epidemiologische Profil durch einen Anstieg nichtübertragbarer Erkrankungen aus. Das
Schlüsselwörter: Gesundheitssystem ist heterogen, fragmentiert und nur lose integriert. Es gibt weder eine einheitliche
partizipative Entscheidungsfindung Forschungsagenda noch staatliche Initiativen zur Förderung der Implementierung von partizipativer
Patientenbeteiligung Entscheidungsfindung und diesbezüglicher Forschung. Durch das Inkrafttreten des Patientenrechtege-
Patientenrechte setzes (‘‘Ley de derechos de los pacientes‘‘) wurden in jüngster Zeit deutliche Fortschritte im Hinblick auf
Implementierung die Achtung der Patientenautonomie erzielt. In diesem Gesetz ist das Recht der Patienten auf Information
Argentinien und Aufklärung als Schlüsselelement der Entscheidungsfindung ausdrücklich verankert worden.
Nach unserem Wissensstand ist die Abteilung für Allgemein- und Familienmedizin am Hospital
Italiano de Buenos Aires die einzige in Argentinien, an der partizipative Entscheidungsfindung (PEF) derzeit
thematisiert wird. Diese Abteilung forscht, bildet Studierende der Medizin im Grund- und Hauptstudium
aus und widmet sich der Implementierung von PEF in der klinischen Praxis unter Einsatz von Strategien,
die gleichermaßen auf Fachkräfte wie auch Patienten abzielen.

∗ Corresponding author: Mariela Barani, Department of Family and Community Medicine, Hospital Italiano de Buenos Aires, Argentina.
E-mail: marielabarani@gmail.com (M. Barani).

http://dx.doi.org/10.1016/j.zefq.2017.05.003
1865-9217/
M. Barani et al. / Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) 123-124 (2017) 12–16 13

Bei der Implementierung von partizipativer Entscheidungsfindung begegnen wir verschiedenen Heraus-
forderungen: 1) der Fragmentierung und Heterogenität im örtlichen Gesundheitswesen; 2) dem Umstand,
dass das Team, das sich mit diesem Thema befasst, nur aus wenigen Mitgliedern besteht, die gleichzeitig
in der medizinischen Versorgung, im Management sowie in Lehre & Forschung tätig sind; 3) dass wir von
Regierungsseite keine Unterstützung erhalten und dass die Mittel zur Finanzierung von Projekten knapp
sind; 4) dass die Teilnahme an Veranstaltungen zum aktuellen Stand der partizipativen Entscheidungs-
findung aufgrund der geografischen Lage unseres Landes mit großen Aufwand verbunden ist.
Angesichts des aktuellen Zustands des Gesundheitswesens in unserem Land halten wir es für eher
unwahrscheinlich, dass die Regierung die Umsetzung von partizipativer Entscheidungsfindung oder
Forschung auf diesem Gebiet in naher Zukunft fördern wird. Unsere Gruppe wird diese lokale Initiative
weiter fortführen, auch mit dem Ziel, andere interessierte Gruppen anzusprechen.

Background of the health system healthcare coverage through individual contributions to one of the
150 private health insurance providers.
The Argentine Republic is an upper-middle income country The social security system can be described as broad in terms of
[1] located in Southern South America. It is divided into 23 coverage and segmented in terms of the number of funds involved,
provinces and an autonomous city (Autonomous City of Buenos with increasing transfer of risk to the providers, in a clear separation
Aires) for administration purposes, with big socio-economic dif- between insurance functions and delivery functions. Legislation
ferences among them. By 2010 Argentina had a population of 40.1 passed in recent years moves towards a system with greater con-
million inhabitants [2] (49% male and 51% female). The estimated centration of funds, and mainstreaming of a mandatory medical
population in 2017 is approximately 44 million people [3]. Around plan financed through cross-subsidising among people with differ-
92% of the population lives in urban areas and one third lives in ent incomes and risks. However, the employment crisis reduces the
the metropolitan area of Buenos Aires, which also accounts for 40% total financing sources of the system, which impacts the funding of
of the GDP (gross domestic product). Regarding the structure of the provider model.
the population, the population is visibly ageing. The ratio of elderly
people went from 2.5% in 1895 to 3.9% in 1947 and 10% in 2010.
The health of Argentines has improved considerably in the Legislative efforts to get shared decision making
past twenty years as they now live longer and better. The epi- implemented in the Argentine health system
demiological profile is characterised by a growing prevalence of
non-communicable diseases [4]. However, there is a huge gap Medical practice has suffered dramatic changes in past decades
among the provinces. If we take, for instance, maternal mortality, due to several factors: the advancement of technology, the enact-
while its rate in the City of Buenos Aires in 2015 was lower than 2 ment of laws enshrining the right to health, and the proliferation of
per 10,000 live births, in the northern provinces of the country the patients’ rights, among others. The doctor-patient-family relation-
rate was somewhere between 10 and 15, according to the province ship is based on the paternalistic model, but is currently adapting to
[5]. Similarly, in the areas with a higher per-capita income, child the paradigm shift as reflected in the national legislation. The prin-
mortality is 6.4 per 1,000 live births, while it is 12.4 in the poorest ciple of free will has been legally reflected by the right to personal
provinces [6]. self-determination. In light thereof, the protection of the human
Healthcare in Argentina has very unique features, so it is difficult right to health needs to be enshrined in laws enabling the adop-
to talk of a single health system. Multiple health financing systems tion of healthcare-related informative and documentary measures.
—loosely integrated and internally fragmented— coexist, compete The importance of patients’ rights in this context, as the pivotal
and overlap in Argentina: the public sector, the compulsory social element of medical relationships, has been made clear by interna-
security sector (obras sociales or union health insurance providers) tional organisations like the World Health Organisation, the United
and the private sector [7,8]. Nations, the European Union, and the Council of Europe, among
The public sector comprises the provincial and national admin- others. They have adopted declarations and passed legislation and
istrative structures at the ministry level and the network of public protocols in that regard.
hospitals and healthcare centres that provide free care to any per- Law 26.529, better known as the ’Patients’ Rights Act’, is in force
son that requires so (usually people without social security who in Argentina; it is a first step —necessary and meaningful— towards
have no means), and is financed through tax revenues. The compul- the protection and enforcement of the right to health [9]. This law
sory social security sector is structured around three types of social expressly provides for the patients’ right to receive information as a
security institutions: 1) the national obras sociales, around 270 key element in decision-making, especially at times like the present
institutions organised by economic sector, managed by the work- when patients are leaving behind the role of passive subjects in the
ers’ unions and coordinated by a national agency (Health Services doctor-patient relationship and becoming the lead when it comes
Superintendence); 2) the provincial obras sociales, 24 institutions to deciding on their own bodies. The enactment of this law allows
providing health insurance to the civil servants of each province; for behaviours so far governed almost exclusively by ethical rules
and 3) the Comprehensive Medical Care Plan of the National Insti- to become enforceable, but there are as well individual and other
tute of Social Services for Retirees and Pensioners, which provides behaviours of interest to the society that require regulation in order
coverage to retirees from the national welfare system and their to prevent the excessive court action of late. In the future, upon
families. a conflict of opinions or values between the healthcare team and
The private sector includes: a) professionals providing indepen- the patient regarding the performance —or not—of a given proce-
dent services to private patients insured by specific union health dure, precedence shall be given to the patient’s will and decision as
insurance providers or private health insurance systems; b) health- patients are free and autonomous beings.
care facilities, also hired by the union health insurance providers; From an information standpoint, patients lack technical and
and c) voluntary health insurance companies called private health scientific knowledge about their condition, the diagnostic or ther-
insurance providers. Approximately 6% of the population has apeutic procedures at hand, the risks and benefits involved, the
14 M. Barani et al. / Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) 123-124 (2017) 12–16

options available and the consequences of no treatment. This tional grants because they are not typically meant to fund projects
knowledge gap can be a hurdle that must be overcome by translat- in upper-middle income countries.
ing the necessary information into simple language, thus enabling There are big differences among the Argentine population: cul-
health services users to decide what is best for their body and con- tural, socio-economic and educational differences. So far, most of
science. For many years, medical decisions have been made by the the research has focused on a middle-class population (due to
healthcare team on behalf of the patients but, with the advent of the access and proximity issues), like most research on SDM world-
information age and the globalisation of knowledge, a new social wide. Our goal is to conduct research with socio-economically and
order has been established where citizens know and demand every educationally disadvantaged social sectors, so as to develop knowl-
right they have. In this way, the existence of personal autonomy is edge of populations with said characteristics, predominant in our
being slowly and gradually accepted, thus determining the possi- country, and who could also benefit from SDM.
bility of choosing your own self-referential goals in life, which is a It is worth noting some of the challenges we face when conduct-
right for all citizens and not charity —in bioethical terms— by the ing research: 1) the fragmentation and the heterogeneity of our
members of the healthcare team. health system; 2) we are a small group of people working on this
This information and decision-making process is called topic who, at the same time, have care, management and teaching
informed consent and is clearly defined by law: ‘Sufficient decla- responsibilities, so our dedication to research is part-time; 3) we
ration of will as made by the patient, or their legal representatives, have no government support and project funding is scarce; 4) due
as they case may be, after receiving from the attending health- to the geographic location of the country (Southern South America)
care professional clear, accurate and adequate information relating and its economic situation, we must make a great effort in order to
to: 1) their health condition; 2) the recommended procedure and attend events on the state of the art in SDM.
its goals; 3) the expected procedure benefits; 4) the foreseeable
risks, discomforts and adverse reactions; 5) the specification of
alternative procedures and their risks, pros and cons versus the Clinical practice guidelines, decision aids and SDM
recommended procedure.’
One of the most salient points of the law is the regulation, at Creation of clinical practice guidelines in Argentina is a mess.
the national level, of advance directives. These are acts of self- There are very few guidelines produced by the National Health
protection whereby the right to free will is enforced and their object Ministry [14]. Every scientific association, even every healthcare
is to protect our right to choose or reject a medical treatment. facility, issues their own guidelines that are far from meeting the
Scientific, technological and pharmacological breakthroughs and AGREE standards for clinical practice guidelines.
advances have led to prolonging life and curing diseases in ways To our knowledge, there are no guidelines including tools to
never imagined in the past, but their use sometimes becomes inap- favour SDM or instruments that help healthcare providers and
propriate when the sole goal is delaying a foreseeable fatal event: their patients to discuss their preferences. It is well known that
death. This results in a distortion of the medical goal, which is not the space provided in the guidelines for evidence and recom-
prolonging life indefinitely, but promoting health and quality of mendations vastly exceeds the space provided for instruments for
life and, where appropriate, restoring health when there is disease. person-centred decision-making.
This law was passed in 2009 and amended in 2012 by a law known Our working group has not developed any new tools, but
as the Death with Dignity Act, which specifies the advance direc- adopted existing ones instead (see paragraph below). We hope
tive procedure and the rights of terminal patients in more detail. different sectors work together in the future in order to have acces-
We can conclude that since 2009 Argentina has a Patients’ Rights Act sible, good quality tools produced in Spanish in accordance with the
that is in tune with the implementation of shared decision-making. IPDAS criteria.
Nevertheless, the existence of this law is necessary, but absolutely
not enough to secure the lead role of the patients when it comes to
making decisions on their health. Specific terminology and decision tools in Spanish

‘Shared decision-making’ is the English term used to refer to


Research and development of SDM the collaborative process that takes place between patients and
healthcare professionals for the purpose of making health decisions
There is no direct support from government agencies or policies weighing the best available evidence and the people’s preferences
encouraging research on SDM in Argentina. and values. The term used in Spanish is ‘toma de decisiones compar-
The Department of Family and Community Medicine of the Hos- tidas’ [shared decision-making] and, although easy to understand
pital Italiano de Buenos Aires (SMFyC) is the only healthcare group from a language perspective, it often requires explaining who the
that is currently conducting research on SDM and its implemen- people who share the decisions are. As Argentina is dominated
tation in clinical practice. Research on SDM takes priority and is by a paternalistic doctor-patient relationship, people wait for the
strongly encouraged on our group’s research agenda. healthcare provider to tell them by the end of the visit the course
The SMFyC has carried out several research projects related of action to be followed. It is unnatural for the patients to think
to SDM measurement, including the adaptation and validation of they can make health decisions together with their doctor for it is
instruments such as the OPTION scale [10], the translation, adapta- the doctor who has the knowledge. Similarly, for most doctors it is
tion, and validation of the CollaboRATE measure [11] and the ‘Ask also unnatural to think that patients may directly get involved in
3 questions’ survey [12]. Such award-winning projects were pre- the decision to be made regarding the most appropriate screening,
sented in national and international congresses and are about to be diagnostic or treatment plan.
published. The term ‘patient-centred care’ and its Spanish translation
These projects are funded mostly by the SMFyC or through ‘cuidados centrados en la persona’ [person-centred care] has become
grants from the Hospital Italiano de Buenos Aires. There are popular in recent years as healthcare organisations completed
some national subsidies, such as the one from the National Cancer international accreditation programmes in quality and patient
Institute [13], that have been used to finance research projects safety. As part of such programmes, certain standards regarding
on directly-related topics, although not specifically conceived to patients and family rights must be met. In practice, ‘person-centred
encourage research on SDM. It is hard for us to apply for interna- care’ is far from being understood as empowering the patients to
M. Barani et al. / Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) 123-124 (2017) 12–16 15

adopt an active role in looking after their health and share the Furthermore, we actively engage in congresses organised by
power in the relationship with the physician. scientific and medical associations of family medicine, general
Considering that the official language of Argentina is Spanish, medicine, internal medicine and gynaecology through lec-
the lack of validated decision aids in said language constitutes a tures/symposia and workshops to discuss SDM topics.
big hurdle in the implementation of SDM. Most aids are written in
English and very few have a Spanish version available, but, in our Patient-mediated implementation strategies and patient
opinion, their translation is really bad. There is a smaller number of empowerment
aids in proper, intelligible Spanish though but, unfortunately, not
in the variety that is spoken in Argentina. Our working group has As part of the plan to promote shared decision making, we have
adopted in its clinical practice the decision aids in proper Spanish made a video [20] specially aimed at patients for the purpose of
(like the Statin Choice Decision Aid of the Mayo Clinic [15]) and is promoting their involvement in decisions concerning their health.
currently working in the creation of Spanish versions of other tools The video explains the concept of SDM in a simple way and encour-
that are only available in English (Option Grids decision aids: Sore ages patient involvement through three simple questions meant to
throat: antibiotics or not? [16], Colorectal Cancer: Which Screening start the dialogue between doctors and patients during the medical
Test Should I have? [17]) that would conform to the local flavour. visit.
In some cases, it is possible for physicians with knowledge of the This is the first video in Spanish for that purpose and is one
English language to directly use decision aids in English, especially of the videos broadcast in all the waiting rooms in the hospital. It
when the aids are meant to be used with the patient in the office serves as the kick-off of all activities directly aimed at the patients
or when the patient speaks English too. to promote SDM within the organisation.
We have also written an article to that end for a hospital publi-
cation that is distributed among all hospital patients [21].
SDM in medical education
Performance indicators in quality management plans
SDM is neither included in the mandatory undergraduate
curriculum nor as an elective course in Argentine medical schools.
A quality improvement plan has been in place at the SMFyC since
At the Instituto Universitario del Hospital Italiano de Buenos Aires
2005. It encourages physicians to take part in teaching and con-
(IUHI) —private medical school affiliated with the Hospital Italiano
tinuing education activities, and also promotes family medicine
de Buenos Aires—, students are introduced to SDM and PCC by
exemplary practices and continuity of care. Initially, it focused
means of theoretical discussions and practical cases in the course
mainly on quality and clinical effectiveness indicators, and encour-
Family Medicine.
aged the use of traditional indicators such as the mammography
The SMFyC together with the IUHI give postgraduate courses to
rate in the recommended population or the HbA1c testing rate
the medical community in general on outpatient and family health-
in diabetics. Such disease-specific indicators have been gradually
related issues, including training in SDM (theoretical discussion and
replaced as they favour action and disregard patient preferences
role playing of practical cases in a three hours session).
and values —although many of them are ‘evidence-based’, evidence
Besides, in said courses, all the contents are analysed from the
turns into ‘tyranny’ if what matters to the patient is not taken into
perspective of SDM and PCC, regardless of whether a screening,
account.
statin or aspirin use to reduce cardiovascular risk, treatment goals
Upon implementing the SDM plan, we decided to assess the
in diabetic or hypertensive patients, etc. is being discussed.
baseline situation and measure how much physicians got the
As part of their postgraduate education, resident physicians
patients involved in medical decisions in our department’s outpa-
with the SMFyC engage in the continuing education activities for
tient offices, from both the healthcare providers’ and the patients’
the department’s physicians described below, during the four years
perspectives using the OPTION scale and the ColaboRATE. Based on
of their residency.
this assessment, we intend to manage opportunities for improve-
ment in this area. At the moment, none of the indicators are
SDM implementation promoted within the quality plan and they are not part of the per-
formance assessment of our physicians either. We are resolved to
The strategy of SDM implementation in the clinical practice finding metrics that would allow us to faithfully monitor the inter-
within the SMFyC is mainly aimed at the healthcare profession- action with patients within the setting of the medical visit so as to
als, but we have also developed strategies aimed at empowering apply them to the entire medical team.
the patients. Given the current state of the health system in Argentina, we
believe the government is not likely to encourage, implement or
research on SDM in the short term. All progress in the area is going
Implementation strategies aimed at the professionals to be carried out by independent groups interested in working on
the field. We wish key issues such as PCC and SDM to be taken into
Different educational activities are carried out weekly within account in the development of public policies.
the SMFyC for all their physicians: grand rounds, journal clubs and
discussion groups. Shared decision-making is approached in every Conflict of Interest
activity from a cross-sectional perspective with the help of a SDM
leader, a member of the SDM team working within the Depart- The authors declare that there is no conflict of interest.
ment. Specific SDM workshops are organised regularly in order to
develop basic and advanced skills through theoretical and practical
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