Shared decision making in Argentina in 2017 - ZEFQ

Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) 123-124 (2017) 12–16

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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 2

Department of Family and Community Medicine, Hospital Italiano de Buenos Aires, Argentina Research Department, IUHI, Hospital Italiano de Buenos Aires, Argentina

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Article History: Available online: 22 May 2017

Keywords: shared decision making patient involvement patients’ rights implementation Argentina

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Artikel-Historie: Online gestellt: 22. Mai 2017

Schlüsselwörter: partizipative Entscheidungsfindung Patientenbeteiligung Patientenrechte Implementierung Argentinien

a b s t r a c t Argentina is a high-middle income country located in Southern South America with an estimated population 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. There are no unified research agenda or government initiatives encouraging the implementation of and research on shared decision making (SDM). Progress has been made lately to respect patient autonomy through the enactment of the ‘Patients’ Rights Act’, which expressly enshrines the right of patients to get information as a key element of decision-making. To our knowledge, the team at the Department of Family and Community Medicine of the Hospital 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.

z u s a m m e n f a s s u n g Argentinien mit geschätzt 44 Millionen Einwohnern liegt im Süden Südamerikas und gehört zu den Ländern mit mittleren bis hohen Einkommen. Was die Gesundheit der Bevölkerung betrifft, so zeichnet sich das epidemiologische Profil durch einen Anstieg nichtübertragbarer Erkrankungen aus. Das Gesundheitssystem ist heterogen, fragmentiert und nur lose integriert. Es gibt weder eine einheitliche Forschungsagenda noch staatliche Initiativen zur Förderung der Implementierung von partizipativer Entscheidungsfindung und diesbezüglicher Forschung. Durch das Inkrafttreten des Patientenrechtegesetzes (‘‘Ley de derechos de los pacientes‘‘) wurden in jüngster Zeit deutliche Fortschritte im Hinblick auf die Achtung der Patientenautonomie erzielt. In diesem Gesetz ist das Recht der Patienten auf Information 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: [email protected] (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

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Bei der Implementierung von partizipativer Entscheidungsfindung begegnen wir verschiedenen Herausforderungen: 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 Entscheidungsfindung 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 The Argentine Republic is an upper-middle income country [1] located in Southern South America. It is divided into 23 provinces and an autonomous city (Autonomous City of Buenos Aires) for administration purposes, with big socio-economic differences among them. By 2010 Argentina had a population of 40.1 million inhabitants [2] (49% male and 51% female). The estimated population in 2017 is approximately 44 million people [3]. Around 92% of the population lives in urban areas and one third lives in the metropolitan area of Buenos Aires, which also accounts for 40% of the GDP (gross domestic product). Regarding the structure of 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 past twenty years as they now live longer and better. The epidemiological profile is characterised by a growing prevalence of non-communicable diseases [4]. However, there is a huge gap among the provinces. If we take, for instance, maternal mortality, while its rate in the City of Buenos Aires in 2015 was lower than 2 per 10,000 live births, in the northern provinces of the country the rate was somewhere between 10 and 15, according to the province [5]. Similarly, in the areas with a higher per-capita income, child mortality is 6.4 per 1,000 live births, while it is 12.4 in the poorest provinces [6]. Healthcare in Argentina has very unique features, so it is difficult to talk of a single health system. Multiple health financing systems —loosely integrated and internally fragmented— coexist, compete and overlap in Argentina: the public sector, the compulsory social security sector (obras sociales or union health insurance providers) and the private sector [7,8]. The public sector comprises the provincial and national administrative structures at the ministry level and the network of public hospitals and healthcare centres that provide free care to any person that requires so (usually people without social security who have no means), and is financed through tax revenues. The compulsory social security sector is structured around three types of social security institutions: 1) the national obras sociales, around 270 institutions organised by economic sector, managed by the workers’ unions and coordinated by a national agency (Health Services Superintendence); 2) the provincial obras sociales, 24 institutions providing health insurance to the civil servants of each province; and 3) the Comprehensive Medical Care Plan of the National Institute of Social Services for Retirees and Pensioners, which provides coverage to retirees from the national welfare system and their families. The private sector includes: a) professionals providing independent services to private patients insured by specific union health insurance providers or private health insurance systems; b) healthcare facilities, also hired by the union health insurance providers; and c) voluntary health insurance companies called private health insurance providers. Approximately 6% of the population has

healthcare coverage through individual contributions to one of the 150 private health insurance providers. The social security system can be described as broad in terms of coverage and segmented in terms of the number of funds involved, with increasing transfer of risk to the providers, in a clear separation between insurance functions and delivery functions. Legislation passed in recent years moves towards a system with greater concentration of funds, and mainstreaming of a mandatory medical plan financed through cross-subsidising among people with different incomes and risks. However, the employment crisis reduces the total financing sources of the system, which impacts the funding of the provider model.

Legislative efforts to get shared decision making implemented in the Argentine health system Medical practice has suffered dramatic changes in past decades due to several factors: the advancement of technology, the enactment of laws enshrining the right to health, and the proliferation of patients’ rights, among others. The doctor-patient-family relationship is based on the paternalistic model, but is currently adapting to the paradigm shift as reflected in the national legislation. The principle of free will has been legally reflected by the right to personal self-determination. In light thereof, the protection of the human right to health needs to be enshrined in laws enabling the adoption of healthcare-related informative and documentary measures. The importance of patients’ rights in this context, as the pivotal element of medical relationships, has been made clear by international organisations like the World Health Organisation, the United Nations, the European Union, and the Council of Europe, among others. They have adopted declarations and passed legislation and protocols in that regard. Law 26.529, better known as the ’Patients’ Rights Act’, is in force in Argentina; it is a first step —necessary and meaningful— towards the protection and enforcement of the right to health [9]. This law expressly provides for the patients’ right to receive information as a key element in decision-making, especially at times like the present when patients are leaving behind the role of passive subjects in the doctor-patient relationship and becoming the lead when it comes to deciding on their own bodies. The enactment of this law allows for behaviours so far governed almost exclusively by ethical rules to become enforceable, but there are as well individual and other behaviours of interest to the society that require regulation in order to prevent the excessive court action of late. In the future, upon a conflict of opinions or values between the healthcare team and the patient regarding the performance —or not—of a given procedure, precedence shall be given to the patient’s will and decision as patients are free and autonomous beings. From an information standpoint, patients lack technical and scientific knowledge about their condition, the diagnostic or therapeutic procedures at hand, the risks and benefits involved, the

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options available and the consequences of no treatment. This knowledge gap can be a hurdle that must be overcome by translating the necessary information into simple language, thus enabling health services users to decide what is best for their body and conscience. For many years, medical decisions have been made by the healthcare team on behalf of the patients but, with the advent of the information age and the globalisation of knowledge, a new social order has been established where citizens know and demand every right they have. In this way, the existence of personal autonomy is being slowly and gradually accepted, thus determining the possibility of choosing your own self-referential goals in life, which is a right for all citizens and not charity —in bioethical terms— by the members of the healthcare team. This information and decision-making process is called informed consent and is clearly defined by law: ‘Sufficient declaration of will as made by the patient, or their legal representatives, as they case may be, after receiving from the attending healthcare professional clear, accurate and adequate information relating to: 1) their health condition; 2) the recommended procedure and 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 recommended procedure.’ One of the most salient points of the law is the regulation, at the national level, of advance directives. These are acts of selfprotection whereby the right to free will is enforced and their object is to protect our right to choose or reject a medical treatment. Scientific, technological and pharmacological breakthroughs and advances have led to prolonging life and curing diseases in ways never imagined in the past, but their use sometimes becomes inappropriate when the sole goal is delaying a foreseeable fatal event: death. This results in a distortion of the medical goal, which is not prolonging life indefinitely, but promoting health and quality of life and, where appropriate, restoring health when there is disease. This law was passed in 2009 and amended in 2012 by a law known as the Death with Dignity Act, which specifies the advance directive procedure and the rights of terminal patients in more detail. We can conclude that since 2009 Argentina has a Patients’ Rights Act that is in tune with the implementation of shared decision-making. 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.

Research and development of SDM There is no direct support from government agencies or policies encouraging research on SDM in Argentina. The Department of Family and Community Medicine of the Hospital Italiano de Buenos Aires (SMFyC) is the only healthcare group that is currently conducting research on SDM and its implementation in clinical practice. Research on SDM takes priority and is strongly encouraged on our group’s research agenda. The SMFyC has carried out several research projects related to SDM measurement, including the adaptation and validation of instruments such as the OPTION scale [10], the translation, adaptation, and validation of the CollaboRATE measure [11] and the ‘Ask 3 questions’ survey [12]. Such award-winning projects were presented in national and international congresses and are about to be published. These projects are funded mostly by the SMFyC or through grants from the Hospital Italiano de Buenos Aires. There are some national subsidies, such as the one from the National Cancer Institute [13], that have been used to finance research projects on directly-related topics, although not specifically conceived to encourage research on SDM. It is hard for us to apply for interna-

tional grants because they are not typically meant to fund projects in upper-middle income countries. There are big differences among the Argentine population: cultural, socio-economic and educational differences. So far, most of the research has focused on a middle-class population (due to access and proximity issues), like most research on SDM worldwide. Our goal is to conduct research with socio-economically and educationally disadvantaged social sectors, so as to develop knowledge of populations with said characteristics, predominant in our country, and who could also benefit from SDM. It is worth noting some of the challenges we face when conducting research: 1) the fragmentation and the heterogeneity of our health system; 2) we are a small group of people working on this topic who, at the same time, have care, management and teaching responsibilities, so our dedication to research is part-time; 3) we have no government support and project funding is scarce; 4) due to the geographic location of the country (Southern South America) and its economic situation, we must make a great effort in order to attend events on the state of the art in SDM.

Clinical practice guidelines, decision aids and SDM Creation of clinical practice guidelines in Argentina is a mess. There are very few guidelines produced by the National Health Ministry [14]. Every scientific association, even every healthcare facility, issues their own guidelines that are far from meeting the AGREE standards for clinical practice guidelines. To our knowledge, there are no guidelines including tools to favour SDM or instruments that help healthcare providers and their patients to discuss their preferences. It is well known that the space provided in the guidelines for evidence and recommendations vastly exceeds the space provided for instruments for person-centred decision-making. Our working group has not developed any new tools, but adopted existing ones instead (see paragraph below). We hope different sectors work together in the future in order to have accessible, good quality tools produced in Spanish in accordance with the IPDAS criteria.

Specific terminology and decision tools in Spanish

‘Shared decision-making’ is the English term used to refer to the collaborative process that takes place between patients and healthcare professionals for the purpose of making health decisions weighing the best available evidence and the people’s preferences and values. The term used in Spanish is ‘toma de decisiones compartidas’ [shared decision-making] and, although easy to understand from a language perspective, it often requires explaining who the people who share the decisions are. As Argentina is dominated by a paternalistic doctor-patient relationship, people wait for the healthcare provider to tell them by the end of the visit the course of action to be followed. It is unnatural for the patients to think they can make health decisions together with their doctor for it is the doctor who has the knowledge. Similarly, for most doctors it is also unnatural to think that patients may directly get involved in the decision to be made regarding the most appropriate screening, diagnostic or treatment plan. The term ‘patient-centred care’ and its Spanish translation ‘cuidados centrados en la persona’ [person-centred care] has become popular in recent years as healthcare organisations completed international accreditation programmes in quality and patient safety. As part of such programmes, certain standards regarding patients and family rights must be met. In practice, ‘person-centred care’ is far from being understood as empowering the patients to


adopt an active role in looking after their health and share the power in the relationship with the physician. Considering that the official language of Argentina is Spanish, the lack of validated decision aids in said language constitutes a big hurdle in the implementation of SDM. Most aids are written in English and very few have a Spanish version available, but, in our opinion, their translation is really bad. There is a smaller number of aids in proper, intelligible Spanish though but, unfortunately, not in the variety that is spoken in Argentina. Our working group has adopted in its clinical practice the decision aids in proper Spanish (like the Statin Choice Decision Aid of the Mayo Clinic [15]) and is currently working in the creation of Spanish versions of other tools that are only available in English (Option Grids decision aids: Sore throat: antibiotics or not? [16], Colorectal Cancer: Which Screening Test Should I have? [17]) that would conform to the local flavour. In some cases, it is possible for physicians with knowledge of the English language to directly use decision aids in English, especially when the aids are meant to be used with the patient in the office or when the patient speaks English too.

SDM in medical education SDM is neither included in the mandatory undergraduate curriculum nor as an elective course in Argentine medical schools. At the Instituto Universitario del Hospital Italiano de Buenos Aires (IUHI) —private medical school affiliated with the Hospital Italiano de Buenos Aires—, students are introduced to SDM and PCC by means of theoretical discussions and practical cases in the course Family Medicine. The SMFyC together with the IUHI give postgraduate courses to the medical community in general on outpatient and family healthrelated issues, including training in SDM (theoretical discussion and role playing of practical cases in a three hours session). Besides, in said courses, all the contents are analysed from the perspective of SDM and PCC, regardless of whether a screening, statin or aspirin use to reduce cardiovascular risk, treatment goals in diabetic or hypertensive patients, etc. is being discussed. As part of their postgraduate education, resident physicians with the SMFyC engage in the continuing education activities for the department’s physicians described below, during the four years of their residency.

SDM implementation The strategy of SDM implementation in the clinical practice within the SMFyC is mainly aimed at the healthcare professionals, but we have also developed strategies aimed at empowering the patients. Implementation strategies aimed at the professionals Different educational activities are carried out weekly within the SMFyC for all their physicians: grand rounds, journal clubs and discussion groups. Shared decision-making is approached in every activity from a cross-sectional perspective with the help of a SDM leader, a member of the SDM team working within the Department. Specific SDM workshops are organised regularly in order to develop basic and advanced skills through theoretical and practical contents. As for science communication outside the department, an article on this topic has been published in the hospital’s journal [18]. We have also written a chapter in the book Medicina Familiar y Práctica Ambulatoria [19]. The latter is a reference text for general and family medicine for the Spanish-speaking audience.

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Furthermore, we actively engage in congresses organised by scientific and medical associations of family medicine, general medicine, internal medicine and gynaecology through lectures/symposia and workshops to discuss SDM topics. Patient-mediated implementation strategies and patient empowerment As part of the plan to promote shared decision making, we have made a video [20] specially aimed at patients for the purpose of promoting their involvement in decisions concerning their health. The video explains the concept of SDM in a simple way and encourages patient involvement through three simple questions meant to start the dialogue between doctors and patients during the medical visit. This is the first video in Spanish for that purpose and is one of the videos broadcast in all the waiting rooms in the hospital. It serves as the kick-off of all activities directly aimed at the patients to promote SDM within the organisation. We have also written an article to that end for a hospital publication that is distributed among all hospital patients [21]. Performance indicators in quality management plans A quality improvement plan has been in place at the SMFyC since 2005. It encourages physicians to take part in teaching and continuing education activities, and also promotes family medicine exemplary practices and continuity of care. Initially, it focused mainly on quality and clinical effectiveness indicators, and encouraged the use of traditional indicators such as the mammography rate in the recommended population or the HbA1c testing rate in diabetics. Such disease-specific indicators have been gradually replaced as they favour action and disregard patient preferences and values —although many of them are ‘evidence-based’, evidence turns into ‘tyranny’ if what matters to the patient is not taken into account. Upon implementing the SDM plan, we decided to assess the baseline situation and measure how much physicians got the patients involved in medical decisions in our department’s outpatient offices, from both the healthcare providers’ and the patients’ perspectives using the OPTION scale and the ColaboRATE. Based on this assessment, we intend to manage opportunities for improvement in this area. At the moment, none of the indicators are promoted within the quality plan and they are not part of the performance assessment of our physicians either. We are resolved to finding metrics that would allow us to faithfully monitor the interaction with patients within the setting of the medical visit so as to apply them to the entire medical team. 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 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 account in the development of public policies. Conflict of Interest The authors declare that there is no conflict of interest. References [1] World Bank Data Help Desk, World Bank Country and Lending Groups. https://datahelpdesk.worldbank.org/knowledgebase/articles/906519-worldbank-country-and-lending-groups. (accessed 20.03.17). [2] Instituto Geográfico Nacional, División Política, Superficie y Población. http://www.ign.gob.ar/NuestrasActividades/Geografia/DatosArgentina/ DivisionPolitica. (accessed 24.03.17).

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[3] Instituto Nacional de Estadísticas y Censos , Proyecciones provinciales de población por sexo y grupo de edad 2010-2040. http://www.santafe.gov.ar/index.php/web/content/download/215324/ 1117185/file/proyecciones prov 2010 2040.pdf. (accessed 20.03.17). [4] Belló M, Becerril-Montekio VM. Sistema de salud de Argentina. Salud Pública Mex 2011;53(suppl 2):S96–108. [5] Dirección de Estadísticas e Información en Salud , Natalidad y Mortalidad 2014 - Síntesis Estadística 1. http://www.deis.msal.gov.ar/wp-content/ uploads/2016/05/Sintesis-estadistica-Nro1.pdf, 2016.(accessed 24.03.17). [6] Dirección de estadísticas e información de Salud - Ministerio de salud de la Nación , Natalidad, Mortalidad General, Infantil y Materna por Lugar de Residencia. http://www.deis.msal.gov.ar/wp-content/uploads/ 2016/03/Boletin151.pdf, 2015. (accessed 24.03.17). [7] Centro de Estudios de Estado y Sociedad , Serie de seminarios salud y política pública. http://imgbiblio.vaneduc.edu.ar/fulltext/files/TC048347.pdf, 2003. (accessed 20.03.17). [8] García C. La atención de la salud en Argentina: Al gran pueblo argentino . . . ¿Salud? - Primera entrega. Evid Act Pract Ambul 2016;19:2–4. [9] Sistema Argentino de Información Jurídica, Decreto reglamentario de la ley 26529 sobre derechos del paciente en su relación con los profesionales e instituciones de la salud. http://www.saij.gob.ar/1089-nacional-decretoreglamentario-ley-26529-sobre-derechos-paciente-su-relacion-profesionalesinstituciones-salud-dn20120001089-2012-07-05/123456789-0abc-9801000-2102soterced, 2012. (accessed 21.03.17). [10] Observer OPTION Instrument, Homepage. http://www.optioninstrument.org/. (accessed 21.03.17). [11] CollaboRATE, Homepage. http://www.collaboratescore.org/. (accessed 23.03.17). [12] Person-centred care resource centre, Testing and refining the ‘‘Ask 3 Questions’’ campaign promoting shared decision making to patients in Newcastle.

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