Value-based health in renal care in Latin America · A total of 31 participants took part in this...

A report by The Economist Intelligence Unit

Value-based health in renal care in Latin America

Sponsored by

November 2017


© The Economist Intelligence Unit Limited 20171

About this report 2

Executive summary 4

Chapter 1: The challenge of chronic kidney disease in Latin America 6

Chapter 2: Value-based renal care in Latin America 10Context, policy and institutions for value in renal care 11Patient-focused care, patient outcomes and patient experience 17Cost and payment approach 23

Chapter 3: The advanced model of renal care in Ontario, Canada 26

Conclusion and opportunities for improvement 28

Glossary 32

Bibliography 34

Contents



About this report

Value-based health in renal care in Latin America is an Economist Intelligence Unit report sponsored by Baxter. It assesses the challenges that chronic kidney disease pose to health systems, healthcare professionals, patients and their carers, and it explores a value-based proposition of renal care in Latin America.

In September 2017, the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) organised the 6th ISPOR Conference for Latin America in Sao Paulo, Brazil, and held an Educational Forum sponsored by Baxter to discuss renal care in Latin America. A total of 31 participants took part in this discussion, representing several countries in the region—Brazil, Chile, Colombia, Dominican Republic, Mexico and Paraguay—and also Canada. The participants were experts in renal care drawn from various different sectors and functions including academia, patient representatives, practitioners, providers, payers and policymakers.

The Economist Intelligence Unit conducted additional research, including literature research and individual interviews with 11 participants in the Educational Forum, to develop a value-based proposition for renal care in Latin America, which is presented in this report.

We would like to thank the following individuals (listed alphabetically) for sharing their insight and experience:

Lizbeth Acuña, Cuenta de Alto Costo, Colombia

Gustavo Aguilar, Entidad Promotora de Salud (EPS) Asmet Salud, Colombia

Kleyton de Andrade Bastos, Sociedade Brasileira de Nefrologia (Brazilian Society of Nephrology), Federal University of Sergipe, Brazil

Peter Blake, Ontario Renal Network, Canada

Alejandro Bryón, HEORT - Health Economics & Outcomes Research Team, Colombia

Alfonso Bunch, Renal Therapy Services, Colombia

Adriana Cardona, EPS Comfenalco Valle, Colombia

Hernán Castellanos Ramírez, Institución Prestadora de Servicios (IPS) Compensar, Colombia

Carlos Castro, ALE Donación de Órganos (ALE Donation of Organs) and Federación Mexicana de Enfermos y Transplantados Renales (FEMETRE, Mexican Federation of Renal and Transplant Patients), Mexico

Ricardo Correa-Rotter, International Society of Nephrology, Mexico

Rodolfo Cortina, Instituto de Seguridad Social y Servicios Sociales de los Trabajadores del Estado (ISSSTE, Institute of Social Security and Social Services for State Workers), Mexico

Manuel Espinoza, Pontificia Universidad Católica de Chile, Chile



Adrián Esquinas, EPS Compensar, Colombia

Luisa Giraldo, Cuenta de Alto Costo, Colombia

Celso Gondo, Unimed, Brazil

Jaime González, Oncólogos del Occidente, Colombia

Marcos Martínez, Instituto Nacional de Nefrología, Paraguay

Antonio Mendéz Duran, Instituto Mexicano del Seguro Social, Mexico

Yussif Ali Mere Junior, Associação Brasileira de Centros de Diálise e Transplante, Brazil

Claudia Morales, EPS Salud Vida, Colombia

Pablo Otero, EPS Sura, Colombia

Renato de Jesus Padilha, Federação Nacional das Associações de Pacientes Renais e Transplantados do Brasil (FENAPAR, National Federation of Associations of Renal and Transplant Patients in Brazil), Brazil

Daniela Ponce, Universidade Estadual Paulista, Botucatu, Brazil

Thyago Proenca de Moraes, Pontifícia Universidade Católica do Paraná, Brazil

Wanda Rodríguez, Hospital Padre Billini, Dominican Republic

Emilio Santelices, Organización Seguros CLC, Escuela Salud Publica, Universidad de Chile, Chile

Gloria Sención, Hospital Padre Billini, Dominican Republic

Luis Alberto Soler, Cuenta de Alto Costo, Colombia

Ana Velázquez, Empresas Públicas de Medellín, Colombia

Carlos Zúñiga, Sociedad Chilena de Nefrología, Chile

We would like to thank the following individuals (listed alphabetically) for their advisory role:Claudia Brabata, Baxter, USRamiro Gilardino, ISPOREduardo González Pier, Center for Global Development, US

The Economist Intelligence Unit Healthcare teamAuthor: Sara C MarquesEditor: Alan LovellSearch: Elly VaughanClinical advisor: Rob Cook

The Economist Intelligence Unit bears sole responsibility for the content of this report. The findings and views expressed in the report do not necessarily reflect the views of the sponsor.



Executive summary

As the burden of infectious diseases decreases and life expectancy increases, the challenges presented by non-communicable diseases are growing and are transforming the priorities of

healthcare systems in Latin America. Chronic kidney disease (CKD), a progressive loss of kidney function that is frequently associated with other conditions, is one of the high-burden diseases that calls for co-ordinated efforts. Countries in Latin America need to be prepared to address the growing challenge of CKD.

In the pursuit of healthcare focused on patients, the value of interventions is becoming more important than volume. Countries should align their health systems with value-based healthcare, focusing on health outcomes and managing expenditure accordingly.

The Economist Intelligence Unit has previously defined value-based healthcare as the creation and operation of a health system that explicitly prioritises health outcomes that matter to patients relative to the cost of achieving those outcomes.1 In this report, we define value-based healthcare components for renal care and assess alignment with these components in Latin America, focusing on Brazil, Chile, Colombia, the Dominican Republic and Mexico. A total of 13 indicators characterise the three components:

Context, policy and institutions for value in renal care (five indicators)

Patient-focused care, patient outcomes and patient experience (four indicators)

Cost and payment approach (four indicators)

Research for this study included a literature review, insights gathered at an Educational Forum at the sixth ISPOR (International Society For Pharmacoeconomics and Outcomes Research) Conference for Latin America, entitled “Innovative models and payment schemes for the treatment of ESRD [end-stage renal disease] in Latin America. Value-based decision-making”, and follow-up interviews with some of the participants in the forum. Experts interviewed came from a wide range of areas of expertise and included policymakers, nephrologists and patient representatives.

Overall, this study found that care for people living with CKD, and alignment of renal care with value-based healthcare, vary greatly across Latin America. The study identified a general need for improvement of renal services, including access to care. Alignment with value-based healthcare models is still in its early stages of development in the region, with several countries starting to consider patients’ preferences and needs when deciding treatment but making few, if any, official efforts to develop renal disease registries or value-based payment mechanisms. Value-based healthcare is still an unfamiliar concept to many in the region.



Colombia is the exception in this study, as it has a developed system that shows resemblances to the renal care system in Ontario, Canada. Colombia provides universal access to renal treatment and has set up a government agency to address the challenge of renal disease, and this has led to the development of a renal disease registry and outcomes-based payment mechanisms.

This study shows that some countries in Latin America face pressing challenges in relation to renal care, such as improving accessibility to treatment and the quality of services. The fragmentation of health systems in Latin America significantly impacts the quality of care that is delivered to kidney disease patients and has contributed to the increase in the socioeconomic burden of the disease. Strong political will and partnerships between different stakeholders are needed to facilitate a move towards a value-based renal care model; countries that are falling behind can look to successful models that have been implemented elsewhere and can adapt these strategies to their own context.



Chapter 1: The challenge of chronic kidney disease in Latin America

Chronic kidney disease (CKD) is a term used to describe abnormal kidney function and/or structure.2 It is a syndrome characterised by a progressive loss of kidney function, and is frequently associated

with other diseases, notably cardiovascular disease. CKD is usually asymptomatic but is detectable through markers of kidney function, such as glomerular filtration rate. There are five stages of CKD based on glomerular filtration rate (Table 1). Early stages can be managed with lifestyle changes and eventually medication to control blood pressure and cholesterol levels. Kidney disease may progress silently and lead to stage G5, also called end-stage renal disease (ESRD), reaching a point at which patients need renal replacement therapy (RRT) to rid the body of waste products. RRT includes dialysis treatment and kidney transplantation. Transplantation is the best treatment option for ESRD in terms of improving patients’ quality of life, but it is an expensive intervention and is dependent on the availability of organs. Consequently, transplantation is not available to all patients.

Two main types of dialysis are available, namely haemodialysis and peritoneal dialysis. During haemodialysis the patient’s blood is pumped out of their body, filtered in a machine and pumped back into their body. The procedure is usually performed in a hospital or renal clinic, approximately three times a week. Haemodialysis at home is possible but requires heavy financial investment–for example, in Ontario only a minority of patients have access to this form of treatment, and it is either very rare or unavailable in Latin American countries. For peritoneal dialysis, patients have a thin tube permanently inserted into their abdomen, and the peritoneal membrane, rather than a machine, filtrates the blood. Peritoneal dialysis is carried out daily and can be done at home or in another clean and hygienic location of the patient’s choice.

Clinical manifestations of renal disease significantly affect quality of life, especially in ESRD patients, who may experience cardiovascular, metabolic and cognitive disorders. Morbidity and mortality are high.

Table 1. Stages of CKD according to glomerular filtration rate.CKD stage Glomerular filtration rate (ml/min/1.73 m2) Term (kidney function)

G1 ≥ 90 Normal or high

G2 60-89 Mildly decreased

G3a 45-59 Mildly to moderately decreased

G3b 30-44 Moderately to severely decreased

G4 15-29 Severely decreased

G5 < 15 Kidney failure (ESRD)Source: UK National Institute for Care and Excellence.2



The burden of infectious diseases in Latin America has been reduced in the past few decades, and non-communicable diseases, such as kidney disease, pose now a greater challenge. Prevalence of kidney disease is expected to continue to increase in the coming years, especially given the longer life expectancy and increasing prevalence of diseases that can lead to CKD, such as hypertension. Diabetes can also lead to the development of CKD, however, the degree to which management of diabetes can prevent CKD still lacks consensus; developed countries, for example, seem to focus less on diabetes prevention as a way to prevent CKD than countries in Latin America.

Data on CKD in Latin America are scarce, making it difficult to assess the impact of the disease on health systems and society in general. A lack of awareness and prevention strategies, low rates of early detection and poor disease management contribute to the increase in the burden. Although there has been socioeconomic development in Latin America in the past decades, inequality is still a reality, and people of high and middle socioeconomic status frequently have greater access to treatment for a number of diseases, including kidney disease.

The prevalence of ESRD patients who are on RRT or are in need of it in Latin America has been increasing over the past few decades. Based on a regional renal registry, 669 patients per million population (pmp) were on RRT in Latin America in 2013, with Panama, Brazil, Argentina, Uruguay, Chile, Mexico (Jalisco state) and Puerto Rico reporting prevalence above the mean in increasing order (see Table 2).3 There is significant variation in the number of patients on replacement therapy, ranging from 190 pmp in Paraguay to 1,847 pmp in Puerto Rico, reflecting significant disparities of access to treatment in the region.

The increase that has occurred in RRT prevalence has been a result of rising life expectancy and the increase in incidence of CKD-associated diseases—which have increased the prevalence of CKD—and also the greater access to CKD treatment and the improved survival rates of patients undergoing treatment. Prevalence of RRT is increasing in Latin America at a higher rate than in developed countries, reflecting the efforts to improve access that are being made in developing countries. Prevalence of patients on RRT is frequently used as a proxy for prevalence of CKD, but this underestimates the total number of patients, as not all patients require RRT and patients who do need it do not all have access to treatment. However, determining the real number of patients is a challenge in itself, due to the lack of national registries in most countries in the region. In Colombia, data on kidney disease patients are collected and show that RRT rates have increased continuously since 2009; however, RRT prevalence is still below the regional average.3 This may suggest low access to treatment or that Colombia has better prevention strategies, and superior management of healthcare in general and of renal disease in particular, compared with other countries in Latin America, having achieved quality standards similar to those in developed countries. Mexico, on the other hand, has much higher RRT prevalence, suggesting that access to treatment has improved but also that there is poor management of risk factors and prevention of progression. In fact, ESRD was the seventh-highest reason for seeking specialist medical attention and the fourth-biggest cause of hospitalisation in people aged over 65 covered by the largest social security institute in Mexico in 2012.4



Of the RRT modalities, haemodialysis is generally more widely used than peritoneal dialysis across Latin America, and its use is growing faster than the alternatives. Costa Rica, El Salvador and Guatemala are the only countries in the region that reported higher prevalence of peritoneal dialysis than of haemodialysis in 2013.3, 5 The Instituto Mexicano de Seguro Social (IMSS, Mexican Social Security Institute) states IMSS patients also undergo more peritoneal dialysis than haemodialysis, in line with the organisation’s goal of 65% peritoneal dialysis uptake.6 The lack of national registries of data on renal care limits the ability to determine the real rates of dialysis by modality. Considering the limited size of renal care budgets in Latin America and the possibility of achieving cost savings by increasing the use of peritoneal dialysis, the continuing trend towards greater use of haemodialysis is a matter of concern. The cost burden of a disease goes beyond the cost of the medical treatment,

Table 2. Chronic kidney disease (CKD) in Latin America, 2013.Country Population

(millions)GDP per head

(US$)Total

prevalence RRT (pmp)

Nephrologists (pmp)

Death (rate per 100,000)

in 2016

DALYs (rate per 100,000)

in 2016

Argentina 42.5 14,414 859.9 27.2 25.2 534.9

Bolivia 10.4 2,948 245.1 2.3 30.7 722.2

Brazil 201.0 12,292 707.8 16.3 16.3 425.3

Chile 17.5 15,939 1,285.4 7.4 22.0 489.1

Colombia 47.3 8,030 603.9 2.0 16.3 424.0

Costa Rica 4.7 10,570 400.9 5.0 23.6 601.0

Cuba 11.4 6,760 347.6 46.9 18.8 498.5

Dominican Republic 10.3 6,027 278.9 11.3 17.0 441.3

Ecuador 15.8 6,030 550.2 8.9 29.3 679.8

El Salvador 6.3 3,896 594.7 7.3 59.2 1471.0

Guatemala 15.6 3,452 433.0 3.3 27.2 803.6

Honduras 8.7 2,122 209.6 2.1 32.1 829.9

Mexico 122.5 10,296 1,653.5 5.8 46.2 1261.9

Nicaragua 5.9 1,847 257.1 4.6 38.1 1101.6

Panama 3.8 11,686 696.0 6.3 23.0 605.4

Paraguay 6.5 4,477 189.6 6.8 25.1 626.0

Peru 30.5 6,495 378.5 9.9 17.4 394.8

Puerto Rico 3.6 19,205 1,846.7 26.8 37.2 790.3

Uruguay 3.4 16,959 1,087.3 50.8 23.1 456.7

Venezuela 29.9 12,400 565.9 16.5 24.5 666.5

Latin America: - - 669.0a 14.0a 26.0b 691.5b

Global: - - - - 16.1 473.9DALYs: disability-adjusted life years; pmp: per million population; RRT: renal replacement therapy.a Countries in the Sociedad Latinoamericana de Nefrología e Hipertensión (SLANH, Latin America Nephrology

and Hypertension Society).b Latin America and Caribbean.Total RRT and number of nephrologists in Mexico are extrapolated from data for the state of Jalisco.Sources: Gonzalez-Bedat MC et al.3; Institute for Health Metrics and Evaluation8; The Economist Intelligence Unit.



as it also includes the costs of transportation to the treatment facility, of the patient’s absence from the workforce, and of caregivers, including the cost of their time off work and the opportunity cost of their having to focus on the patient rather than themselves. All these factors need to be considered in determining the cost-effectiveness of each treatment option and the real economic burden of CKD.

Some countries have developed programmes to improve renal care; however, sometimes the creation of policies is not followed by action to support their implementation. An example is the Ministerial Ordinance focused on ESRD patients that was issued in Brazil in 20147, which was not accompanied by the financial or logistical support required to put it into effect.

Countries in Latin America need to recognise the challenge of kidney disease and develop health systems and renal care models that are able to reduce the burden of the disease.



Chapter 2: Value-based renal care in Latin America

The increase in life expectancy and the rise in the burden associated with chronic diseases is pushing healthcare systems to the limit. Is has become evident to stakeholders, including policymakers and

healthcare providers, that health systems need to create innovative methods of treatment delivery and payment in order to maintain and develop their sustainability. This approach means associating health outcomes with costs, and is known as value-based healthcare.

Value-based healthcare focuses on the value delivered to patients, so that an intervention that does not significantly improve outcomes, such as survival or quality of life, has less value, and therefore should attract a lower level of financial compensation, than an intervention that improves outcomes. Countries with more advanced healthcare systems and higher healthcare spending levels are moving towards value-based healthcare.1 Middle-income and lower-income countries are either at the beginning of the journey towards value-based health or have yet to start it.

When focusing on kidney disease, three main areas emerge as most important in the assessment of value-based healthcare models: context, policy and institutions for value in renal care; patient-focused care, outcomes and patient experience; and costs and payment approach (see Figure 1). Each of these areas includes factors that are specific to renal care or to value-based healthcare, thus allowing for a comprehensive analysis. We followed this framework to assess renal care in Latin America.

Figure 1. Value-based healthcare in kidney disease: An assessment of healthcare systems

Renal disease burden

Access to and coverageof renal care

Renal disease policiesand programmes

Evidence-basedguidelines for renal care

Health professionaleducation and training

in value-based care

Inter-organisationaland inter-professional

partnerships

Renal disease registry

Interoperable electronichealth records

Quality of care andpatient experience

Cost of renal care

Collection of dataon treatment costs

Payer systems

Mechanism(s) toidentify interventions

for prioritisation

Renal care-specific indicators Value-based healthcare indicators

Context, policy andinstitutions for value

in renal care

Patient-focused care, outcomes and patient

experience

Costs and paymentapproach



Context, policy and institutions for value in renal careRenal disease burdenCKD has been identified as one of the ten leading causes of early death in several countries in Latin America, including Chile, Colombia and Mexico (Table 3).9 The disease puts great stress on Latin American health systems and populations, but its burden is not entirely clear to all stakeholders across the region. Action to increase knowledge, to improve understanding of the socioeconomic impact of the disease and to implement significant changes is still limited in most countries.

Colombia has demonstrated its understanding of the renal care challenge in recent years through its efforts to minimise the burden for patients and the healthcare system. Action has been taken to increase knowledge of the real impact of kidney disease, and using that information Colombia has developed and implemented strategies to improve care and reduce costs. However, in other countries, such as Brazil, Chile and Mexico, knowledge is limited and collection of data is not a priority.

The lack of awareness of the impact of kidney disease among the general population and the inactivity of stakeholders need to be addressed. In order to implement change, it is important to understand the full extent of the problem. The lack of a complete understanding of the disease within the context of each country’s socioeconomic situation and health system accentuates the difficulties involved in trying to minimise its impact.

Access to and coverage of renal careProviding universal coverage to CKD treatment, including RRT, is financially very demanding, and for many countries in Latin America it is not currently feasible. A number of countries in the region provide universal access to RRT—they include Argentina, Brazil, Chile, Colombia, Uruguay and Venezuela. Prevalence of RRT in these countries is similar to that in developed nations.10, 11 However, not all

Table 3. CKD as one of the ten leading causes of early death in Latin America.Countries where CKD is one of the ten leading causes of death

Antigua and Barbuda Dominica Paraguay

Argentina Ecuador Peru

The Bahamas El Salvador Puerto Rico

Barbados Grenada Saint Lucia

Belize Guyana Saint Vincent and the Grenadines

Bermuda Guatemala Suriname

Bolivia Honduras Trinidad and Tobago

Chile Jamaica Venezuela

Colombia Mexico Virgin Islands

Costa Rica Nicaragua

Cuba Panama

Countries where CKD is not one of the ten leading causes of death

Brazil Haiti

Dominican Republic UruguaySource: GBD 2016 Causes of Death Collaborators.9



individuals have access to treatment; this is especially the case where RRT is not covered by the public health system. In Mexico, for example, only about half of ESRD patients are estimated to have coverage and access to RRT, and in some areas in Chile waiting times to receive treatment can be very long.11

Mexico has a fragmented health system that is administered by social security institutions that cover approximately 55-60% of the population and by public health insurance.12 People who are in private employment, who are working for the government or who are members of the armed forces are entitled to social security protection. The rest of the population is covered by Seguro Popular (Popular Insurance), which was created in 2004 to provide healthcare services to the uninsured, mostly people on low incomes. Social security institutions in Mexico cover the treatment of kidney disease, but Seguro Popular covers RRT only in specific situations, such as transplantation in patients aged 18 years or below.13 Patients under Seguro Popular have to navigate health and social care structures at a high financial cost, and this further impoverishes families.12 This lack of a public health structure or system that takes care of CKD patients, obliging them to search and pay for health services, adds to the burden on patients and their families. There is consequently a significant gap in Mexico between social security patients and Seguro Popular patients in terms of access to care for CKD and outcomes (including mortality) for the disease.

Brazil has a publicly funded health system, the Sistema Único de Saúde (SUS, Unique System of Health), that is available to all legal residents of the country. Treatment for renal disease is covered through the SUS. However, due to the deficiencies in the system, including the insufficient number of dialysis clinics, there are long waiting times to access treatment. About 10-15% of renal disease patients seek treatment through private insurance plans, a figure that has increased in the past decade.

The Dominican Republic has a publicly funded social security system. Health policies specify universal coverage, but in practice some 20% of the population are uninsured.14 Renal treatment is included in the public basic health plan, and uninsured patients are given the option to sign up when admitted to hospital for treatment. Peritoneal dialysis providers are mostly in the public sector, whereas several providers of haemodialysis are private. Some private clinics are commissioned to provide services within the basic health plan, but generally patients on social security use public facilities.

In Chile there is a public health system, the Fondo Nacional de Salud (FONASA, National Health Fund), financed by a percentage deduction from each person’s salary. Renal disease is included in the Garantías Explícitas de Salud (Explicit Health Guarantees), meaning that there is provision of universal cover, which includes dialysis and transplantation. In addition to the public system, the country also has private health insurance companies that cover treatment for renal disease. Most dialysis providers are private.

Colombia has an inclusive healthcare system consisting of private providers, health insurers known as Entidades Promotoras de Salud (EPS), and one public payer, which since August 2017 has been the Administradora de los Recursos del Sistema General de Seguridad Social en Salud (ADRES, Administrator of the Resources of the General System of Social Security in Health).15 Enrolment in an EPS is mandatory and it is financed by the patient and their employer, while the government covers the costs for those members of the population who lack the financial means to make these payments.16, 17



Treatment of CKD is covered for all patients, and experts believe that there are enough dialysis facilities to serve all those who need treatment. In 2007 Colombia created the Cuenta de Alto Costo (CAC, High Cost Account), with the goal of promoting risk management and improving health outcomes for diseases with a heavy burden. The CAC is therefore responsible for the management of renal disease; it has promoted the development of strategies to improve care and reduce the burden of disease, with encouraging results in both areas. The existence of an entity or organisation responsible for specific diseases, and especially those that impose a heavy socioeconomic burden, is essential to reduce their impact. This is something that is missing in the majority of countries in Latin America; Colombia has set an example for the other countries in the region to follow.

Renal disease policies and programmesThe burden that kidney disease imposes on healthcare systems requires the development of policies or plans to manage the challenge. Disease-focused plans help to improve patient care by setting goals, guiding work and helping in the allocation of healthcare budgets. The World Health Organisation (WHO) has proposed the implementation of renal protection programmes to manage the impact of the burden of chronic kidney disease, namely by implementing prevention and control measures.18 Suggestions put forward in the past to help manage the burden of renal care include screening for diabetes and hypertension and the development of systems to support clinical decision-making, such as mobile applications with management plans in real time and reminder services via messaging.19

Mexico does not have a renal care policy, and the introduction of such a policy is deemed necessary to reduce the inequities of the healthcare system for renal disease patients. A renal disease policy is being developed by a number of stakeholders, including the government, physicians and patient associations such as ALE Donación de Órganos (ALE Donation of Organs) and the Federación Mexicana de Enfermos y Transplantados Renales (FEMETRE, Mexican Federation of Renal and Transplant Patients). Among other measures, the plan calls for greater involvement of physicians other than nephrologists—namely, general practitioners—in efforts to address renal disease. The announcement and further development of the plan had to be postponed due to the earthquake in Mexico City in September 2017, which required emergency action to rebuild the city and re-establish the services that had been hit.

In Brazil, a new measure dedicated to ESRD patients on dialysis, Ministerial Ordinance no. 389/2014, was passed in 2014. It states that patients should be offered dialysis and also conservative treatment—non-dialytic supportive care including attention to fluid balance, treatment of anaemia and management of blood pressure.20 In addition, the ordinance ended reuse of haemodialysis materials, first in patients with hepatitis and later for all patients. Representatives of the Sociedade Brasileira de Nefrologia (Brazilian Society of Nephrology) say that from a clinical standpoint no material should be reutilised, but from an economic point of view this is not currently feasible. The government increased the level of reimbursement for patients with hepatitis B and C to offset the increase in costs, but it does not plan to increase reimbursement for other patients. The recommendation that ESRD patients should be offered conservative treatment was not acted upon, and the availability of such treatment through the public system remains very limited.



Colombia does not have a renal care policy, but given the comprehensive health coverage provided in the country, some experts believe that the introduction of a renal disease policy would probably not bring significant changes. However, national policies provide official frameworks that help to define responsibilities and rights across stakeholders, which could also be useful in Colombia.

Some countries in Latin America have designed strategies to manage the burden of renal disease. For example, the Dominican Republic has included renal disease in its Technical Regulation for the Promotion, Prevention and Control of Chronic Non-communicable Diseases.21 Chile and Uruguay have created national programmes to promote early diagnosis and management of disease in order to prevent progression and maintain quality of life.18, 22 Chile in particular has two prevention plans, one focusing on CKD stages G1-G3 and the other for the most advanced stages. Mexico has developed Kidney Early Evaluation Programmes in Mexico City and the state of Jalisco, in line with similar programmes in the US; these are screening programmes focusing on populations at risk, with the goal of identifying risk and prognostic factors.23 Such programmes do not seem to be widely implemented or promoted in Mexico.

Colombia has implemented renal protection programmes that have improved the management of CKD. Patients on one such programme are reported to have controlled advanced stages of the disease better than patients on conventional therapy, with longer average times for first progression and requiring RRT, and longer life expectancy.18 This shows the potential of preventive treatment in delaying disease progression.

Kidney transplants are currently performed in Latin America, although growth in the number of transplants has not been fast enough to shorten the long waiting lists5, due to the low availability of kidneys and the high cost of the procedures.24 The development and expansion of transplant programmes and the sourcing of suitable donors are essential to increase the number of transplants. One example of such a strategy is the Global Kidney Exchange programme, created by the Alliance for Paired Kidney Donation for the benefit of patients in the US and developing countries, including countries in Latin America. The programme, which was recently established in Mexico, matches patients with donors across borders when no match is available for a patient in the US, creating a donor chain that benefits patients in the US and in the developing country.25, 26 The transplant costs in the developing country are covered by the US non-profit organisation managing the programme, making the transplant possible for patients who would otherwise have to rely on dialysis in order to survive. Other innovative solutions are needed to help CKD patients in Latin America.

Evidence-based guidelines for renal careEvidence-based guidelines are the foundation for choosing the right treatment for each patient. Countries should have organisations that can develop and review guidelines based on the medical, social, economic and ethical impacts of treatments and interventions. Some countries in Latin America, such as Colombia and Chile, have developed renal care guidelines or protocols. In Chile, however, it is not always clear whether the guidelines are being followed, as they are not mandatory and there is no data-collection platform.

At the 2008 Congress of the International Society for Peritoneal Dialysis, a number of proposals were put forward to attempt to contain spending on treatment of ESRD while maintaining health



outcomes.27 One suggestion was to use peritoneal dialysis more widely. Many experts nowadays agree that although haemodialysis is essential for some patients, peritoneal dialysis may be a better option for others because it helps to preserve residual kidney function, permits access to treatment for patients in remote areas, leads to smaller productivity losses and gives patients greater freedom.28 According to Mexico’s Social Security Institute, the IMSS, data show that a larger proportion of patients on haemodialysis are incapacitated compared with those on peritoneal dialysis, who are more frequently still in the workforce. However, the regional tendency is to use more haemodialysis than peritoneal dialysis (see Figure 2). This could be contributing to the lack of sustainability of health systems: given that it requires that patients attend hospital or renal care clinics, haemodialysis would seem to place heavier demands on the health system. In fact, some countries are developing efforts to increase the use of peritoneal dialysis. The Dominican Republic, for example, has developed a programme, Technical Co-ordination for Peritoneal Dialysis, for the promotion of strategies to increase peritoneal dialysis and improve quality control. Mexico has run a Peritoneal Dialysis First campaign, and according to experts this has increased the number of patients on peritoneal dialysis and has also improved the awareness and confidence of healthcare professionals with regard to this RTT modality.

In addition to identifying the right treatment, it is also important to pinpoint the right time for intervention. It is common for physicians to start patients on dialysis earlier than necessary, and this may indicate a need for further training for both general practitioners and nephrologists. At the Hospital Las Higueras in Chile, a recently implemented renal health programme includes pre-dialysis treatment and the practice of delaying the start of dialysis—this has contributed to patient satisfaction and significant savings.

Countries in Latin America, such as Brazil, Chile, Colombia and Mexico, have organisations responsible for the development of evidence-based guidelines;1 however, it is not clear if these are available for renal care as, for example, there is still a lack of awareness of peritoneal dialysis in Brazil and Chile. Is it important that literature is reviewed and that the socioeconomic situation of each country is taken into consideration during the process of developing guidelines, so that physicians are clear about which treatments are available, when to start treatment and when to prioritise one treatment over another. The development and implementation of evidence-based guidelines, especially if these cover prevention and the early stages of the disease as well as treatment of its later stages, have the potential to improve care and produce significant savings. Kidney Disease: Improving Global Outcomes, a global non-profit organisation focused on improving care and outcomes for kidney disease, has developed a number of guidelines for renal care. These have been adopted by several professional organisations, but are not well integrated into routine care in low- and middle-income countries.19

Health professional education and training in value-based careEvidence-based guidelines are of use only if healthcare professionals understand and follow them. Physicians need to undertake specialisations in renal disease in order to become nephrologists, and nephrologists are the healthcare professionals who are most likely to be aware of kidney disease guidelines, but it is still often the case that specialists are not fully aware of all the treatment options for CKD patients. Thus, although CKD patients generally achieve better outcomes when treated by



nephrologists19, there is still a need to expand and improve the training of these specialists. Training in some forms of treatment is still limited in Latin America, and this limits the use of those options and adversely affects the implementation of value-based health in renal disease.

The availability of nephrologists in Latin America differs between countries, with nations such as Chile, Mexico and Paraguay facing shortages of these specialists. The average availability of nephrologists in the region is 14 pmp, ranging from approximately 2 pmp in Colombia, Bolivia and Honduras to 51 pmp in Uruguay (Table 2).3 In Brazil, for example, nephrology is not perceived as an attractive medical specialty; this is believed to be due partly to the heavy work load and also to the low level of salaries. The availability of nephrologists has been increasing in a few countries, such as Mexico, but it is still below the level needed to reach all patients. Because of the shortage of these specialists, it is important that primary-care physicians are able to diagnose and manage kidney disease.

In order to achieve a system whereby kidney disease patients can be overseen in primary care, it is important to provide primary-care professionals with training on diagnosis and management of the disease. Time of diagnosis, for example, has been a challenge in some countries. In Chile, for instance, patients are frequently unaware of their renal condition and the associated cardiovascular risk, and many patients are first diagnosed when they already have advanced disease and have to start emergency dialysis. It has been noted by experts that the number of CKD patients in primary care in Chile is much higher than reports suggest. This highlights the pressing need to provide support for primary-care physicians—a goal that could be achieved by giving renal care specialists access to laboratory results to enable them to support and help to train family doctors.

Figure 3: Prevalence of Renal Replacement Therapy (RRT) in Latin America (per million population)

Source: Gonzalez-Bedat MC et al.3

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The need for additional training is a reality not only for physicians but also for nurses, who, together with social workers, are identified by experts as the most important healthcare professionals dealing with CKD patients. Although nurses frequently work in renal care without having undergone specialist training, renal care courses or specialisations are usually available. Provision and quality of such training varies across organisations.

Although specialisations in renal disease are a requirement for physicians to enable them to become nephrologists, training in value-based care is not generally part of medical education programmes. In some countries, such as the Dominican Republic, some healthcare experts are not yet aware of the concept of value-based healthcare. In order to achieve the best results for both the patient and the healthcare system, it is important to train professionals on renal disease treatment guidelines and also on value-based care, which means putting patients at the centre of care, considering their needs and preferences, and focusing on outcomes rather than cost. Conflicts of interest may be perceived when renal care training is organised or financed by providers of treatment, such as dialysis clinics or providers of pharmaceuticals or medical devices used to treat CKD, and this makes it even more important that public institutions are involved in the training of healthcare professionals.

Patient-focused care, patient outcomes and patient experienceInter-organisational and inter-professional partnershipsAll Latin American countries have renal disease patient associations and professional organisations. These associations lobby for the rights and interests of patients, and fight to increase access to treatment and to improve care. Some patient associations believe that their voice is growing stronger; one such body is the Federação Nacional das Associações de Pacientes Renais e Transplantados do Brasil (FENAPAR, National Federation of Associations of Renal and Transplant Patients), which currently collaborates with members of Congress (Brazil’s legislature). These associations and collaborations help to raise awareness of renal disease and to increase efforts and activities to minimise the burden.

A number of successful partnerships between organisations have been developed in Latin America. The CAC in Colombia communicates with scientific associations, insurance companies, healthcare providers and patient advocate groups with the aim of improving the quality of care by forming collaborative networks. The ALE and FEMETRE patient associations in Mexico have also established important collaborative links with various stakeholders—the development of a national policy for renal disease is one example of such collaboration.

International collaboration is also important for the exchange of knowledge and support in implementing new initiatives. Opportunities to drive the creation of new partnerships are provided by international meetings, such as the XVII Dominican-Spanish Course and the II Mayo Clinic Day hosted by the Dominican Republic in September 2017.29

Inter-organisational and inter-professional partnerships can support the improvement of the healthcare system for renal diseases by combining different voices in support of shared goals. Most countries in Latin America could benefit from collaborative partnerships to help improve renal care.



Renal disease registryDisease registries allow the combined collection of data on the burden of disease, treatment outcomes and treatment costs, and therefore have the potential to improve care pathways and health systems. In 1991 the Sociedad Latinoamericana de Nefrología e Hipertensión (SLANH, Latin American Nephrology and Hypertension Society) founded a regional renal registry, the Latin American Dialysis and Transplant Registry (LADTR). The registry was developed to combine data from the 20 SLANH member countries with the aim of promoting knowledge of ESRD and improving patient care.5 Data collection for the LADTR is conducted through an annual survey of indicators including disease aetiology; incidence and prevalence of cases undergoing RRT by treatment modality; number and type of kidney transplants; and number of nephrologists. The LADTR provides information on trends of prevalence and incidence of renal care in Latin America, and has been the main source of renal disease data in the region. Data are reported aggregated for country, and may be extrapolated for a whole country from reports on one of its regions, as has been done for Mexico using data from the state of Jalisco. Reporting to the registry is not mandatory, however, so not all countries report on an annual basis. These limitations contribute to a reduction in the quality of the information that can be drawn from the registry.

Brazil, Chile and Mexico do not have renal registries. This topic has been more widely discussed in Brazil recently, which is slowly improving the information that is available from the Ministry of Health, although such information remains limited. People living with kidney disease may die from complications of the disease, such as cardiovascular problems, and these are then cited as the cause of death. Such inaccurate reporting of cause of death may prevent a fuller understanding of the impact of kidney disease and may indirectly hamper the development of registries, not only in Brazil but also in other countries.

The Sociedade Brasileira de Nefrologia (Brazilian Society of Nephrology) conducts an annual dialysis census in an attempt to improve knowledge of kidney disease in the country. However, as it is not mandatory to submit data for the census, only around 40% of dialysis clinics respond to the questionnaire. Data submitted are not validated. As with the Latin American registry, the characteristics of the platform in Brazil limit the knowledge that can be drawn from it.

In Mexico there has been a lot of discussion about the development of a kidney disease registry, but no real action has been taken in that direction. Data on patients covered by social security institutes are recorded in those organisations’ own systems. Data collected by these bodies are not shared or mandated to be made available, so they are not accessible in practice. The situation is different for patients who are covered by Seguro Popular, as there are no incentives to collect their data, making the information truly unavailable.

The Dominican Republic is currently developing a renal disease registry for patients on haemodialysis or peritoneal dialysis or who have undergone transplantation. The registry is a result of combined efforts, namely by the Dominican Nephrology Society and the National Health Service, and according to experts it is expected to start operating by the end of 2017. The registry will collect only clinical information.



In Colombia, the CAC collects renal care data in a comprehensive platform, ranging from bloodwork results and treatment outcomes to treatment costs. The registry was set up in 2008, and the data are used to help assess the real burden of CKD in Colombia and to make evidence-based decisions. By 2016 the registry had collected data for over 3.5m people living with CKD, of whom 33,712 were on RTT. The CAC’s goal in operating the data platform is to integrate clinical management with administrative management.

In most Latin American countries there is no commitment to collecting national-level data on renal disease. The consequence is that in some countries survival and mortality rates are not known with precision, which in turn means that the real burden of CKD is not clear. It is expected that the development of a mandatory registry will face resistance in its implementation stages, but it is important to highlight that one of the benefits of having a national registry would be a better understanding of renal disease in each country, which would support the design and implementation of strategies to address the challenge.

Development of interoperable electronic health recordsElectronic health records make information about patients—including medical history, treatment and progress notes—readily available, and thereby improve the quality, safety and efficiency of healthcare services. Interoperable systems that can be accessed by different providers improve service provision even further: they help to ensure better treatment and outcomes by, for example, avoiding unnecessary duplication of tests, examinations and diagnostic pathways.

Some healthcare providers in Latin America use electronic health records, but such records are not consistently available and have not yet been developed in a format that allows the exchange and sharing of data. Countries in the region are making efforts to develop interoperable electronic health records. In Brazil, the majority of dialysis clinics use electronic records, and payment claims are sent through the system. The situation is similar in Colombia, where each healthcare provider has its own system and some providers share electronic platforms with insurers. In Chile, most hospitals keep electronic records and efforts to improve the system are ongoing. Additional interoperable interfaces are under development in the region.

Quality of care and patient experienceIn order to assess quality of care, it is important to define what it means. One framework used by the WHO and the US Agency for Healthcare Research and Quality defines six dimensions in quality of care:

effective, using evidence-based interventions;

efficient, maximising resource use and avoiding waste;

accessible/timely, geographically reasonable, and reducing waits and delays,;

safe, minimising risks and harms;

patient-centred, focusing on the patient’s needs, values and preferences;

equitable, nor varying with personal characteristics such as gender, race or ethnicity, socioeconomic status and geographic location.30, 31



Quality of care is a broad concept that is discussed throughout this document, for example when assessing renal care coverage and existence of evidence-based guidelines for renal treatment. In this section, we will focus on quality of care from the patient’s perspective.

Quality of renal care varies across Latin America, and in most nations it varies even within the country. Care is frequently not fully integrated, and patients must navigate the system and follow complex care pathways, with a resulting negative impact on their experience of the health system. It is important to follow integrated models of care when treating kidney disease, and especially ESRD; such an approach has the potential to lead to better clinical outcomes and to create cost savings for the health system, as has been shown in Colombia. Multidisciplinary teams that include nephrologists, nurses, dieticians, psychologists and social workers are essential, not only to patients with ESRD but also early-stage disease patients. This model may sometimes be challenging to implement, as it calls for close collaboration and can sometimes make it difficult to identify a lead physician. Nephrologists usually take this role for patients on dialysis, as it is nephrologists who see patients most frequently, but in the early stages of the disease it might be less obvious which professional should lead treatment.

In Brazil, dialysis services are required by law to employ nurses, dieticians, psychologists and social workers. Some services—especially the larger centres at the most important universities—extend this offer to non-dialytic renal care patients who have private health insurance, but non-dialytic patients under the public health system, the SUS, do not have access to this multidisciplinary care, demonstrating the inequities of the system. Experts explain that before starting on dialysis, patients are somewhat excluded from the treatment system. Dialysis in Brazil is of high quality, even if the equipment used is of an older generation than that used in developed countries; the main problem that patients face is gaining access to care, both before starting dialysis and to dialysis itself.

This is also one of the main challenges in Mexico. As Seguro Popular does not cover treatment for renal failure, these patients may be required to make significant out-of-pocket payments to gain access to RRT or transplantation. Seguro Popular patients have very limited resources and struggle to afford such payments, meaning that sometimes they cannot access treatment at all or may undergo dialysis less frequently than recommended. This difficulty in accessing treatment often results in death. Patients covered by social security systems in Mexico can access treatment, but they encounter a fragmented system in which each provider follows its own protocol. According to experts, this usually results in an unfavourable patient experience.

Kidney disease patients in the Dominican Republic are overseen by multidisciplinary teams, including dieticians and psychologists, at tertiary-care facilities. Patients are usually presented with treatment options so that their preferences are taken into consideration, suggesting a patient-centred approach, but this concept is nevertheless not widely known in the country. One of the main challenges in the Dominican Republic with regard to renal disease is primary care and early detection of disease. Training opportunities for primary-care professionals have been increased in order to help improve diagnosis, in rural areas as well as the urban centres. Patients living in remote areas are usually referred to specialised hospitals in the main cities, and a number of schemes have been developed to support patients living in remote areas, such as home-care programmes to support the use of peritoneal dialysis and to improve accessibility and equity. However, according to experts the



number of dialysis facilities in the country is not sufficient to treat all patients.In Chile, all regions have main hospitals with renal care services, so that the health system is

designed to reach all patients, including those living in remote areas. Hospitals pay a fine if they do not see a patient within 30 days of referral, so patients are usually guaranteed a maximum 30-day waiting time for a first appointment. However, due to the fragmentation of the system, waiting times for subsequent appointments may be longer. Patients are not usually followed by multidisciplinary teams; physicians and nurses are responsible for medical care, but only rarely is social support provided. Patients are sometimes presented with treatment options; however, in practice they generally have little say in what treatment they receive as, by the time they have been diagnosed, the disease has often progressed so far that they are obliged to have either dialysis or a transplant. Thus, despite the fact that Chile has a sufficient number of dialysis facilities to treat all patients, there is scope for patient experience to be improved.

A telenephrology approach was initiated in 2012 at the Hospital Las Higueras in Talcahuano, Chile, as part of a renal care programme for patients with stages G1-G3. Under this approach, primary-care physicians can consult with nephrologists via an online platform and phone calls, and in 95% of cases they receive a reply within 24 hours. Following teleconsultation, around 40-50% of patients are referred to a hospital to see a nephrologist, to see another specialist or to go directly to the Unidad de Cuidado Renal Avanzado (advanced renal care unit) of the hospital. Nephrologists in the programme have a defined a set of goals, such as the number of teleconsultations that they take per month. By prioritising patients who need to see a specialist, and ensuring that other patients follow the right courses of treatment and health habits without having to visit a care facility, the telenephrology service increases the efficiency of the system and improves patient experience. Telenephrology integrates primary-care services with hospital services, and so far it has improved access to renal care, has eliminated the waiting list of patients referred from primary care for renal services, has reduced the waiting time to see a nephrologist and has made optimal use of the limited number of nephrologists available. The programme also allows the identification of the regions with the largest numbers of patients and the greatest renal care needs—something that is necessary to improve quality of care. The telenephrology approach has been promoted by the health ministry and has been rolled out to other centres across the country.

In 2016 the same hospital developed a multidisciplinary non-dialytic conservative treatment programme for patients, usually aged over 75, who do not want or cannot undergo dialysis. The goal of the evidence-based programme is to prevent cardiovascular complications and to delay progression of disease in patients with advanced disease.

Another initiative implemented at the hospital is the Incremental Dialysis programme, whereby initiation of dialysis is delayed, or dialysis is initiated with a minimal number of sessions and with increments per week as per individual need. This has resulted in greater adherence to treatment, fewer complications, a fall in the number of deaths and reduced costs. According to local experts, Chile’s health ministry has shown interest in supporting the continuation of the programme at the Hospital Las Higueras and in starting a similar programme at a hospital in the capital, Santiago, to verify the findings and assess the possibility of expanding the approach to other regions of the country.



In Colombia, the standard model of renal care for patients on dialysis involves multidisciplinary teams including nephrologists, nurses, psychologists and social workers. Some models are also focusing on pre-dialysis care and deferring the initiation of dialysis, and these new approaches seem to be able to reduce the frequency of hospitalisation and the number of hospitalisation days per year. In Colombia a number of clinical indicators per patient are monitored to support the provision of care and to facilitate comparison of services across providers; they include the proportion of haemodialysis patients with a catheter, and the proportion of peritoneal dialysis patients with haemoglobin levels of at least 10g/dl. The standard model employed in the country uses a patient-centred approach, frequently involving patients in decisions about their treatment, and taking work and lifestyle into consideration when choosing treatment. This is an approach that is not common in Latin America. In Chile and Brazil, for example, medical teams frequently make decisions for patients. In Mexico, on the other hand, this kind of conversation with patients is starting to take place, and patients’ preferences are beginning to be taken into consideration, but this is still not common practice.

Colombia has a comprehensive renal care model that pursues a good quality of care and patient preferences and satisfaction. However, even in this more developed environment care pathways can sometimes be complex for patients, especially for services that are not included in the standard model, such as the procedures necessary for transplantation. In this case, patients must see a number of specialists and undergo medical examinations in order to gain approval to have surgery. Although some clinics employ models that try to improve the patient’s journey, others use models that are difficult for patients to navigate, so that there is scope for improvement in this area in Colombia.

Access to treatment for patients living in remote areas is still a challenge in many countries (not only in Latin America), and this is reflected in differences in patient experiences. In Colombia, Chile and the Dominican Republic, strategies to ensure that all patients have access to treatment include improving diagnosis and the referral process. In Brazil, on the other hand, Ministerial Ordinance no. 389, issued in 2014, supported an increase in peritoneal dialysis in rural areas that have relatively few haemodialysis clinics, notably in the states in the country’s north and north-east, but no changes were made or incentives created from a logistical or financial point of view. In fact, experts mention that the government makes it difficult to open new dialysis clinics. They also point out that private companies state that it would not be financially viable to open centres in those regions. Consequently, patients living in those areas of Brazil do not have the same access to treatment as those living in urban centres.

It is important to consider the impact that CKD has on the family of a patient, especially if the healthcare system is not integrated and organised so as to provide services effectively. Patients with advanced kidney disease become very dependent, and need caregivers. Without the social help that they require, their emotional stress is accentuated. The burden of disease is also reflected in the time that family members or friends must spend in caring for patients, to the detriment of their own self-care in medical and social terms.

Colombia is the most advanced country in Latin America in terms of quality of care for kidney disease patients, but even Colombia needs to improve the system to ensure that all patients have access to the same range and quality of treatment. All countries need to implement changes to ensure that patients are placed at the centre of care and are supported throughout treatment in order to improve their experience.



Cost and payment approachCost of renal diseaseCKD imposes a heavy economic burden on health systems, and it may also impose substantial costs on patients and their families. With increasing life expectancy, the prevalence of kidney disease is expected to rise, which will drive the costs up. In Mexico, for example, there is an estimated 9% annual increase in patients requiring dialysis.32

In the state of Sao Paulo in Brazil, costs of dialysis between January 2008 and July 2012 reached approximately US$181m.33 Haemodialysis accounted for the largest proportion of costs, while less than 15% were costs of peritoneal dialysis, including training of patients or carers and home care.

Various programmes and strategies can be implemented in an attempt to reduce the cost per patient. Such a reduction has already been achieved in Colombia: according to CAC representatives, the changes made to the system have led to a fall in the cost per patient for dialysis adding up to savings of more than US$750m over the last nine years.

According to a recent publication, the IMSS in Mexico spent almost US$300m on dialysis in 2015.32 Costs of haemodialysis accounted for 66% of this US$300m despite a smaller proportion of patients using haemodialysis (41%) compared with peritoneal dialysis (59%). Costs of outsourced haemodialysis services were reported to be considerably higher than haemodialysis at public providers, however, it is not clear if all costs were included in the analysis, such as fixed costs of public providers. This shows the clear need to account for all cost components when assessing the cost of CKD. The continuous increase in the use of peritoneal dialysis in IMSS patients is one strategy to help to contain CKD costs in Mexico.

The programmes involving pre-dialysis treatment and delaying initiation of dialysis at the Hospital Las Higueras in Chile have contributed to delaying the progression of disease and have generated significant savings; according to experts, using this strategy in 54 patients with CKD stage G5 generated savings of around US$250,000. This highlights the importance of identifying the best time to start RRT.

Collection of data on treatment costs for renal careData collection efforts are important for health outcomes and also for the cost of treatment and other interventions: only when the necessary data are available is it possible to understand fully the burden of the disease and to implement value-based payment mechanisms. Unfortunately, the challenges affecting the collection of data on renal care outcomes in Latin America also apply to the collection of data on costs.

In Mexico, the cost of treatment is recorded by social security institutes, as is also the case for health outcomes. However, this system of data collection is limited to dialysis costs, and does not include the direct costs of hospitalisation or medication. Payments for treatment for patients on Seguro Popular are mostly out of pocket and are registered only as user fees from patients at the hospital level. It is therefore not possible to determine with precision how much families in Mexico are spending on treatment for kidney disease patients.



The renal registry currently being developed in the Dominican Republic will record clinical data but not treatment costs. This appears to be a missed opportunity for the country to get ahead in understanding and addressing the CKD challenge.

In Colombia, the registry managed by the CAC collects data on treatment costs from insurers. This has supported the understanding of the burden of kidney disease and the development of strategies to support patients and the healthcare system.

As previously mentioned, the full costs of disease include the costs of medical and social interventions, productivity losses and opportunity costs. Opportunity costs may be difficult to determine, but productivity and social care costs can be more easily estimated if data are collected. Several countries in Latin America still lack a complete understanding of the challenge posed by CKD, reflecting the lack of comprehensive data-collection platforms.

Payer systemsAt the core of value-based healthcare are outcomes-based payment approaches. Value-based healthcare models encourage effective interventions that create value and may create disincentives for interventions that are not cost-effective or do not deliver value. Countries with high healthcare spending levels are more likely to develop and implement outcomes-based payment mechanisms.

In Brazil, Chile and the Dominican Republic, dialysis is paid for under a fee-for-service model. In Brazil, each session of haemodialysis is paid for up to a limit per month, after which the clinic needs to justify any extra sessions per patient in order to receive payment. For peritoneal dialysis, clinics receive a fixed amount per month. However, payments from the SUS are not sufficient to cover treatment costs; for example, each haemodialysis session is paid for at a rate of approximately US$60, whereas the actual cost for the clinic is around US$80. Dialysis is paid for at a higher rate for patients who receive treatment privately, meaning that clinics need to attract a significant number of patients through private plans in order to remain financially viable.

In Chile, although bundled payments are sometimes available, payments within renal care are fixed per activity. For the telenephrology programme at the Hospital Las Higueras, specialists are paid per month.

In Mexico, social security institutes, IMSS and ISSSTE, finance services mostly provided by their own networks of hospitals and clinics and some services are outsourced to private providers. They use a “global budget” model to pay their own public providers, whereby hospitals receive a general budget to cover infrastructure, personnel and medical services, including dialysis, hospitalisation and emergency visits. Social security institutes contract private providers for haemodialysis but not for peritoneal dialysis, and they compensate private providers via monthly bundled payments based on the number of haemodialysis sessions they provide.

Haemodialysis sessions and peritoneal dialysis for Seguro Popular ESRD patients are paid for with a fixed rate. As Seguro Popular does not cover dialysis, patients try every possible way of moving to health coverage by a social security institute. When their efforts are unsuccessful and they are obliged to remain under the Seguro Popular system, they are assigned a payment tier by a social worker.



Unfortunately, it is common for patients to be assigned a tier that is too demanding, meaning that families struggle to make payments. Some individual states in Mexico pay for renal care services for Seguro Popular patients to ensure that their residents have access to treatment; these services are paid for out of state budgets and funding varies between states. Efforts are being made in the direction of rewarding integrated care in Mexico, with higher incentive payments made when additional services are provided.

Colombia has implemented an outcomes-based payment approach. Insurers need to provide data on the patients whom they cover in order to receive payment. Through the collection of data, the CAC has been able to implement a system that can rank insurance companies according to how well they manage kidney disease. Therefore, number of renal disease patients and management of CKD are considered to determine incentive payments to insurers. Thus the system in Colombia supports the collection of data and at the same time the generation of value.

In addition to implementing outcomes-based payment mechanisms for ESRD patients, it is also important to use these approaches for treatment of early-stage disease. Providers that are able to delay the progression of disease create greater value for patients and for the system, and this should be reflected in the payment approach in order to incentivise the diagnosis and treatment of early-stage disease.

Mechanisms to identify interventions for prioritisationThe development of a value-based healthcare model involves the identification of treatment options and interventions that should be prioritised, taking into consideration benefits for the patient and the sustainability of the healthcare system. Countries should have organisations responsible for identifying interventions that are not cost-effective or are not creating value. For example, in addition to considering health outcomes and direct costs for the health system, it is important to consider patients’ quality of life and productivity. The percentage of patients remaining in the workforce is usually greater for those on peritoneal dialysis than for those on haemodialysis28, which is an indicator that peritoneal dialysis should be prioritised to create value for the patient and the society.



Chapter 3: The advanced model of renal care in Ontario, Canada

O f all the Latin American countries, Colombia’s renal care model is the most advanced and is the closest to being a value-based healthcare model. Other countries and regions around the world

have implemented strategies to respond to the challenge of kidney disease. In Ontario, Canada, awareness of a lack of progress in managing the burden of kidney disease led in 2009 to the creation of the Ontario Renal Network (ORN). ORN is a government agency responsible for the direction of renal services in the province. Ontario uses an advanced model of renal care, with strategies that could be adopted by countries in Latin America.

In Canada, healthcare is the responsibility of each individual province. The provinces are the sole payers, and there are no private health plans. Healthcare is universally available, generally accessible and comprehensive. Before establishing its renal network, Ontario was experiencing difficulties in increasing rates of transplantation (which provides better outcomes) and peritoneal dialysis (which is cheaper than haemodialysis). There was no systematic data-collection platform, and nephrologists were not involved with the improvement of the system. Ontario had an agency dedicated to improving cancer services, Cancer Care Ontario, which was achieving good results in driving change and quality improvement, while the province of British Columbia had developed the British Columbia Renal Agency to plan and co-ordinate services for kidney disease patients. ORN was modelled on these two agencies.

ORN controls approximately 1% of the healthcare budget of the province. It currently has 26 Regional Renal Programmes for the provision of dialysis and other kidney care services. The agency has a leading and administrative role, while the programmes have an executive function.

ORN develops renal care plans every three or four years, the one currently in place being the Ontario Renal Plan II 2015-2019.34 The main goals of the plan are to empower and support patients and family members to be active in their care, to integrate patient care throughout the CKD continuum and to improve access to care. At the centre of ORN are stakeholder involvement and a commitment to patient-centred, evidence-based and cost-effective care. ORN organises meetings throughout the year to discuss renal care in the province, and a wide range of stakeholders, including dieticians and pharmacists, are invited.

One of the most innovative of ORN’s strategies is the assessment of renal care centres and the resulting benchmark of Regional Renal Programmes. A comprehensive informatics system has been developed to collect renal care data, and this is used to assess care and determine funding. The programmes have to provide the data for all patients in order to receive payment. The system includes financial incentives to increase further the use of home dialysis, including peritoneal dialysis and home haemodialysis, and each centre is given a goal that is adjusted on the basis of previous assessments. Four times a year ORN discusses with the Regional Renal Programmes their positions in the benchmarking table, and together they consider measures to drive improvements. This has been an



effective strategy as, in response to their awareness of their own performance and that of colleagues, the programmes continuously strive to do better. As quality of care is not identical across all centres, some of the facilities can receive additional incentives to train or provide services for other centres (for example, inserting peritoneal dialysis catheters), thereby supporting all centres in achieving their goals.

The benchmarking strategy, the involvement of programmes with data collection and the use of value-based incentives empower physicians and create a culture of accountability: ORN is accountable for renal disease in Ontario, but the Regional Renal Programmes share responsibility for managing and improving the system.

Besides the use of financial incentives, other initiatives have been developed and implemented to increase the use of home dialysis in Ontario. For example, the start of dialysis is deferred whenever possible. All these strategies have led to greater patient satisfaction and reduced costs; not all therapeutic areas provide the opportunity to develop strategies that can improve quality of care, including patient experience, and reduce costs at the same time, and this is something that ORN has been able to capitalise on.

ORN has launched a package of evidence-based guidance for primary-care professionals, the KidneyWise Clinical Toolkit.35 This represents an attempt to optimise rates of referral and reduce the risk of disease progression. Some healthcare professionals still cling to the belief that physicians should make all treatment decisions, but there is an increasing tendency to present patients with alternatives and help them to make decisions themselves.

The advances achieved in Ontario following the creation of ORN are clearly evident. However, there are still some challenges. Access for people living in the north of Ontario, in rural and remote areas, is still difficult. For these patients, home dialysis is the preferred option, and if they need to relocate in order to receive haemodialysis they receive help from social workers. Some (usually older) patients prefer not to relocate and to let the disease take its course. Another challenge is the need for fully integrated care, especially when considering transplantation. In preparation for a kidney transplant, patients need to make several visits to medical facilities as they need to see a number of specialists, but only rarely are the appointments co-ordinated. There is thus an opportunity to improve the system by streamlining services.

According to local experts, the main achievements within renal care in Ontario are the high level of commitment demonstrated by the government, ORN and other stakeholders; the emphasis given to a patient-centred approach; the increase in home dialysis; and the delay in starting dialysisall these changes have contributed to reducing costs. British Columbia and Ontario are the two provinces in Canada that have adopted advanced models for renal care; other provinces have recognised the value of ORN, and have expressed interest in developing similar models.



Conclusion and opportunities for improvement

Renal care is addressed differently in different parts of Latin America. Most countries in the region experience difficulties in understanding the full dimensions of the challenge, implementing

strategies to prevent progression of renal disease and providing health services to CKD patients. The conversation about value-based renal care is in its infancy, if it has begun at all, in the majority of countries.

The Economist Intelligence Unit has previously assessed the degree of alignment of health systems to a value-based healthcare models in 25 countries, including Brazil, Chile, Colombia and Mexico.1 We compared the findings from our earlier study with the findings from this study on value-based alignment of renal care. Similarly to what we found previously, Brazil shows poor alignment with value-based models, whereas Colombia is taking steps towards focusing on value rather than volume (see Table 4). Findings suggest that the early signs of alignment of the health system with value-based models in Chile and Mexico are not yet apparent in renal care. Overall, health systems in Latin America show high levels of fragmentation of renal care services, and education and training for healthcare professionals in value-based healthcare in general and the application of this model to renal care is lacking.

Healthcare budgets are restricted everywhere; this is not a limitation that applies only to countries in Latin America. However, high healthcare spending on kidney disease does not guarantee universal renal care, while renal care can be improved even on limited budgets. It is true that it is important to invest in renal care infrastructure and in the workforce, but it is also crucial to understand the epidemiology of kidney disease, to identify cost-effective interventions, to develop, organise and integrate services, and to train healthcare professionals. It is necessary to develop renal care policies and to provide support for their implementation, and this requires long-term planning. Some of these strategies do not necessitate large budgets, but they do require that renal care be positioned higher up the healthcare agenda.

A number of initiatives seem to be essential in order to improve models of renal care in Latin America and move towards value-based care. Our assessment shows some achievements by country, but several challenges are present and need to be addressed (Table 5). Countries in the region can look to the strategies that have contributed to a reduction in the burden of CKD and improvements in the quality of care in Ontario and Colombia. However, it is important to consider the socioeconomic and cultural context: it may not be possible to transfer these models directly to other countries, but several initiatives have the potential to be adapted to the local context.

Development of registries – The registries developed in Ontario and Colombia have supported and continue to support a better understanding of renal disease locally and the development of systems that can treat and support all those in need. Countries in Latin America have been unable to determine



the true burden of renal care as a result of their lack of data-collection platforms. The development of registries allows the monitoring of management of the disease in different centres, including understanding hospitalisation events and ensuring the appropriate use of resources. Registries can also be used to benchmark the various care facilities in order to incentivise the improvement of care, as seen in Ontario.

Development of national or provincial policies – Disease-focused policies set goals and responsibilities, ultimately helping to manage the impact of the disease. There is a great need for CKD policies in Latin America to improve quality of treatment, from improving outcomes to reducing waste.

Creation of organisations accountable for renal disease – Ontario has ORN, while Colombia has the CAC; the creation of these agencies has driven improvements in the organisation of renal services and the delivery of better care for patients. Such organisations can also be stepping stones towards the development of renal care networks by engaging stakeholders in renal care discussions.

Development of evidence-based guidelines – It is important to identify the best interventions to address renal disease taking into consideration not only treatment outcomes but also socioeconomic

Table 4. Alignment with value-based healthcare models.Country Alignment with value-based healthcare models

Brazil

The lack of alignment of the health system in Brazil with value-based healthcare was replicated here for

renal care. The system in Brazil needs to improve the policy environment and to develop a culture of data

collection and of patient-centred services in order to start developing value-based healthcare models.

Chile

Chile was previously shown to be taking steps towards the development of value-based healthcare

models; it has national disease registries, collects patient treatment cost data and has coordinated care

services for some therapeutic areas. However, Chile has not developed a renal disease registry, renal care

services are still fragmented and we were not able to identify a platform where treatment cost data are

collected. This suggests that the health system in Chile is moving towards value-based healthcare, but

there might be a lack of understanding of the CKD challenge, which makes renal care lag behind.

Colombia

It was previously shown that Colombia has some enabling elements for value-based healthcare models,

being the only country of those also studied here that standardises data in disease registries and has

national policies supporting the integration of care and/or the management of disease using patient-

centred approaches. In this assessment, Colombia constantly came up as the most developed system for

renal care, at times showing similarities with the advanced model of Ontario, showing that the health

system in general and renal care in particular are similarly aligned with value-based health models.

Mexico

Mexico was also previously shown to be taking early steps towards value-based healthcare models,

developing evidence-based guidelines and national disease registries, coordinating care services and

showing stakeholder support for value-based healthcare models. When it comes to renal care, while

this stakeholder support is also present and social security institutes show an effort to address the CKD

challenge, there is a fundamental problem in the country, which is the lack of access to services for

patients covered by Seguro Popular. Research suggests that the lack of national platforms for collection of

data on outcomes and costs might be preventing the understanding of the impact of kidney disease.



and cultural factors. Having a single entity that is responsible for the development and revision of evidence-based guidelines for the treatment of renal disease that reflect the latest findings has the potential to improve health outcomes and optimise renal care spending.

Training of healthcare professionals – Education about evidence-based renal care, including all treatment options, can help physicians and patients to determine the best treatment in each situation. Education strategies can include more exhaustive nephrology specialisation programmes as well as courses in treatment centres. Comprehensive training can improve patient outcomes and patient satisfaction, ultimately improving quality of care.

Development of outcomes-based payment mechanisms – Value-based healthcare models rely on the incentivisation of treatments and interventions that create value. This requires the development of payment mechanisms that acknowledge the level of improvement that results from an intervention. For example, payment rates for dialysis can be set according to improvement in quality of life or survival, in place of a fixed rate per session or per month. Interventions in early disease that delay its progression should also be incentivised.

Development of a patient-centred care approach – Value-based healthcare models place the patient at the centre of care. Patients should be better educated in their options for care and should be involved in making decisions about their own treatment. Their needs, goals and preferences should be taken into consideration. Patient involvement is considered essential to the overall management of disease, from early disease to more advanced stages, as better-informed patients are frequently healthier and achieve better outcomes. When patients are given the right tools, they can become experts in managing their own disease. Patient communication is therefore key in renal care.

The burden of kidney disease is expected to increase, especially given the longer life expectancy and increasing prevalence of obesity, diabetes and hypertension. Policymakers need to acknowledge this health challenge, and stakeholders must come together to work towards the prevention of kidney disease and the improvement of its diagnosis and management in an equitable manner.



Table 5: Framework of renal care in Latin AmericaComponents of value-based

renal careBrazil Chile Colombia Dominican

RepublicMexico

Context, policy and institutions

for value

Achievements • Ministerial Ordinance no. 389/2014

• Universal access to renal care

• Universal access to renal care

• Development of Cuenta de Alto Costo (CAC)

• Training of primary care healthcare professionals, namely in remote areas

• National policy for renal care – early stages of development

• Policies of Social Security Institutes with peritoneal dialysis goals

Challenges • Increasing incidence

• Strategies to support implementation of the Ministerial Ordinance no. 389/2014

• Early diagnosis• Access to

treatment, especially in the North and Northeast

• Increasing incidence

• Acknowledging the renal disease challenge

• Early diagnosis




treatment to all patients



treatment to all patients

Patient-focused care, patient

outcomes and experience of

patient

Achievements • Professional associations and patient associations’ voice acknowledged

• Telenephrology, conservative treatment and incremental dialysis programmes in one hospital in Talcahuano

• Patient-centred approach to renal care

• Renal disease registry (via CAC)

• Renal disease registry – early stage of implementation

• Patient associations’ voice acknowledged

Challenges • Patient-centred approach across the whole country

• Conservative treatment

• Renal disease registry

• Increase and improve collaboration

• Patient-centred approach




• Improve collaboration between providers and insurers

Not identified • Patient-centred approach




Cost and payment approach

Achievements Not identified • Savings created with innovative care programmes

• Outcomes-based payment mechanisms

• Savings from measures implemented by CAC

Not identified • Savings from increase of peritoneal dialysis

Challenges • Payments that cover expenses

• Development of outcomes-based payment approaches


Not identified • Non-inclusion of cost data in renal disease registry under development



Source: The Economist Intelligence Unit.



Glossary

Bundled payments: Single payments that cover services delivered by two or more providers during a single episode of care or over a specific period of time.

Chronic kidney disease (CKD): Progressive loss of kidney function, frequently associated with other diseases. CKD can be classified into five stages of disease according to glomerular filtration rate.

Conservative treatment for CKD: Non-dialytic supportive care including attention to fluid balance, treatment of anaemia and management of blood pressure.

Electronic health record: An electronic version of a patient’s medical history that is maintained by the provider over time and which may include all of the key administrative and clinical data relevant to that person’s care under a particular provider, including demographics, progress notes, problems, medications, vital signs, past medical history, immunisations, laboratory data and radiology reports.

Evidence-based healthcare: The care and services flowing from the application of the principles of evidence-based medicine to all professions associated with healthcare, including management and the purchase of goods and services.

End-stage renal disease (ESRD): The most advanced stage of CKD–stage G5 according to glomerular filtration rate.

Glomerular filtration rate: A marker of kidney function used to classify CKD.

Health outcome: A measurable component observed after an intervention has been applied.

Interoperability: The extent to which systems and devices can exchange data and interpret those shared data. For two systems to be interoperable, they must be able to exchange data and subsequently present those data such that they can be understood by a user.

Outcomes-based payment or pay-for-performance: A healthcare payment approach whereby a health insurer or other payer compensates physicians according to evaluations of their performance, typically as potential bonuses on top of physicians’ fee-for-service compensation.



Fee-for-service: A system under which doctors, healthcare providers and/or insurers are paid for each service performed. Examples of services include tests, office visits or haemodialysis sessions.

Universal healthcare: For a community or country to achieve universal health coverage, several factors must be in place, including:

1. A strong, efficient, well-run health system that meets priority health needs through people-centred integrated care (including services for communicable and non-communicable diseases, maternal and child health) by:a. informing and encouraging people to stay healthy and prevent illness;b. detecting health conditions early;c. having the capacity to treat disease; andd. helping patients with rehabilitation.

2. Affordability—a system for financing health services so that people do not suffer financial hardship when using them. This can be achieved in a variety of ways.

3. Access to essential medicines and technologies to diagnose and treat medical problems.

4. A sufficient capacity of well-trained, motivated health workers to provide the services to meet patients’ needs based on the best available evidence.

Value-based healthcare: A health system that prioritises patient-centred outcomes relative to cost.

Value-based payment or pay-for-value: A reimbursement method that encourages doctors and other healthcare providers to deliver the best-quality care at the lowest cost.



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