changing diabetes barometer

First report

changing diabetes

contents
Foreword Preface Executive Summary 1. Time to work together
1.1 Diabetes a story of missed opportunities 1.2 Meeting the challenge 1.3 The Changing Diabetes Barometer in context

4 5 6 10
10 11 12

2. Key Issues
2.1 Development of the Changing Diabetes Barometer concept 2.2 The economics of diabetes 2.3 Raising the capacity and competence of diabetes healthcare professionals 2.4 Expanding access to care 2.5 Improving self-management assessing non-clinical indicators 2.6 Summary of key issues improving quality of life for patients

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3. The Changing Diabetes Barometer

3.1 What is the Changing Diabetes Barometer? 3.2 Inspiring and driving change 3.3 Organisation 3.4 The Changing Diabetes Barometer the future 3.5 Countries included in the Changing Diabetes Barometer survey

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24 26 28 29 30

Changing Diabetes at the national level 4. National examples of diabetes care

4.1 Learning from best practice 4.2 Case studies 4.3 Overview of case studies what do they show us? 4.4 Novo Nordisk initiatives to improve control 4.5 Improving diabetes care in developing countries

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34 35 53 54 55

5. Direct costs of diabetes

5.1 Controlling diabetes, controlling costs 5.2 Studying diabetes in the UK 5.3 Overview of the analysis 5.4 Economic costs of diabetes 5.5 Breaking even and moving into credit 5.6 Conclusion

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58 58 59 63 64 66

6. Indirect costs of diabetes

6.1 What are the indirect costs? 6.2 The Danish example 6.3 Current study in Sweden

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Appendix References

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foreword
It is my rm belief that we can beat diabetes. We all share the same great goal to reduce the impact of diabetes on individuals, families, communities and societies; to help the man, woman and child affected by diabetes to live the very best life they can. Understanding the challenge, and the effects of our efforts, is central to meeting the challenge. Without measuring, we cant improve anything. We need to set standards for ourselves, for patients, for nations and internationally to improve our actions in the ght against this complex, chronic disease. This is what the Changing Diabetes Barometer does. Depending on where you live, diabetes care faces different pressures and has different priorities. The priority may be improving quality of life for people with diabetes, it may be cutting costs, or it may be increasing access to treatment. We need to understand these pressures but also ensure that, whatever the local situation, we all constantly strive to improve our response to diabetes. The Changing Diabetes Barometer initiative is just a beginning but it is my belief that it will constitute an important step following the UN Resolution on diabetes, helping people and governments to respond to the major challenge acknowledged by the UN. The response needs leadership but also partnership. I look forward to continuing to support the initiative, helping it to move forward and ensuring that it has a real impact on diabetes care, and the lives of individuals everywhere. and all people at risk of developing the disease in the future. As it measures the impact of diabetes care, it will provide essential information to support policy making and evaluation. It will communicate standards by which people will start measuring their actions to tackle and treat diabetes and, most importantly, inspire learning from others as efforts are compared with those in other countries and regions.

By 2025 over 380 million people will live with diabetes. The challenge presented by the diabetes pandemic is enormous. With the developing world bearing the brunt of this burden, as well as a global health problem, it is an international economic impediment and a barrier to development. Concerted action from many players to promote healthier lifestyles is vital to reduce the escalation of diabetes, and this must be combined with provision around the world of the best care possible for people already living with it. The Changing Diabetes Barometer is an important new contribution to ensuring that we do the very best we can for all people with diabetes,

Jean-Claude Mbanya
Vice Dean and Professor of Medicine and Endocrinology, University of Yaound, Member of Changing Diabetes Barometer International Advisory Board

preface
As a global diabetes care leader, Novo Nordisk has much to offer as a partner in the ght against diabetes. We support many individual projects around the world to combat diabetes, but our aim is larger. As a business and as a corporate citizen in a world heavily burdened by disease, we want to change diabetes. We want to change the impact diabetes has on lives, change the amount of pain and suffering diabetes causes and change the burden of diabetes on economies around the world. Change is essential if we are to break the curve of the pandemic of diabetes. We believe in the critical role that innovation can play. This innovation is not limited to research into medicines. Instead, innovation The importance of raising awareness of diabetes led Novo Nordisk to be a strong partner in the Unite for Diabetes campaign which led to the adoption of the 2006 UN Resolution on diabetes. Words are, however, not enough. We need to continue to work together to put this resolution into action. In March 2007 we gathered a wide range of stakeholders, including keynote speaker President Bill Clinton, to discuss how we can change diabetes. At this forum we pledged to launch the Changing Diabetes Barometer a new tool to keep score of the ght against diabetes. If we cannot measure diabetes then we cannot manage it. We need to be able to compare interventions and outcomes, just as we do medicines, to drive further innovation and ensure best practices are shared. For too long the ght against diabetes has been conducted in the dark; in many places spending great sums on care without knowing whether the battle is being won or lost. Working with others on this initiative, we intend to turn on the lights. Raising awareness of diabetes is, in itself, a challenge. The effects of this devastating disease are complex and far reaching. All too often, however, its impact is left to wreak havoc unnoticed. This lack of immediacy has been mistranslated into a lack of urgency, and the lack of urgency leads not only to the disease operating silently on the body, but also speaking too quietly in the world of health policy. is needed throughout the diabetes care path, from before a person is diagnosed, and even before they develop the disease, to spread best practices and present the strongest challenge to diabetes.

Lars Rebien Srensen

CEO and President, Novo Nordisk A/S

executive summary
An innovative response to an urgent need
The Changing Diabetes Barometer is both a report and a concept: a framework for measuring progress in the ght against diabetes. The concept is both large and urgent its aim is to inspire the change in approach which is essential if there is to be any chance of bringing the diabetes pandemic under control. Diabetes is growing in its prevalence all over the world. The International Diabetes Federation currently estimates that 246 million people worldwide have diabetes in 2007, which is almost 6% of the adult population. This number is expected to reach 380 million by 2025, or 7.3% of the adult population. Many of these people with diabetes will develop serious medical complications, for which hospital treatment is costly. And as many as a third do not know that they have it so are not taking any action or receiving any treatment. The UN Resolution on diabetes, adopted on 20 December 2006, The world has many excellent initiatives to provide care for people with diabetes, but only a minority are able to benet from them fully. A number of countries have recognised the scale of the pandemic and have put in place national strategies to address it, including steps to train more healthcare professionals and improve access to medicines. But only a few have documented the present level of diabetes care they can offer, or how effective that is in keeping this long-term condition under control. An initial survey for this report reviewed the published data available from 21 countries around the world. It suggested that, of the 21 countries one third had no data on treatment indicators like mean blood glucose (HbA1c), blood pressure and lipid levels; one third did not have data on incidence rates; and only a few had systems in place tracking important key indicators in a dynamic registration database allowing consistent follow up on a national scale. A major effort is needed to improve knowledge about progress in the ght against diabetes, where we are succeeding and where we are failing, and inform decision makers at all levels where to look for inspiring examples of how they can do better. The Changing Diabetes Barometer has three objectives; to illustrate the link between quality of diabetes care, reduction in complications and socio-economic costs, thus providing all stakeholders with the opportunity to make informed choices; focused public and political attention on diabetes in comparison with the infectious diseases which had for so long been in the spotlight. Only three months later, the Global Changing Diabetes Leadership Forum, organised by Novo Nordisk with the support of the IDF, set out to inspire participants from every aspect of diabetes care to make real improvements in their own countries. The Forum established that if a situation is to be managed, we need to be able to measure it, and we need to know how well it is working. Out of this came the Changing Diabetes Barometer. The Changing Diabetes Barometer sets out to encourage just that. It starts from very limited data and examples from several countries India, Israel, Italy, Japan, Sweden and the USA, with accounts of further initiatives from a number of other countries and regions and it is restricted to published data. These countries experiences are analysed to develop an understanding of the potential for improved diabetes care, the difculties that have been overcome, and the early indications of success. After less than ten years experience, several of the countries already systematically collecting and analysing diabetes care data have been able to show signicant improvements; not only in the supply of data, but in the medical outcomes reported. The Changing Diabetes Barometer highlights their achievements and encourages other countries and regions to build their own data systems. More than that, it encourages them to look at their data, nd the weak points, learn from others and set about making the systems stronger.

Key objectives

 improve treatment through inspiring learning, based on measuring and comparing results as all stakeholders develop a clear picture of the current quality of diabetes care in their country; and inspire others to follow best practice examples. At the international level, the Changing Diabetes Barometer aims to inspire national stakeholders to measure the impact of their efforts and learn from international best practice examples. It will monitor progress across countries to encourage constructive competition, and in the future, create an international baseline on the prevention, progress and treatment of diabetes. It will communicate this information and incourage dialogue between healthcare policy makers and payers. At the national level, the Changing Diabetes Barometer will stimulate informed dialogue on the necessity of measuring the treatment progress. Data resources will be developed on the results from countries participating in the initiative. These will include the indicators of diabetes prevention, progress and treatment, plus information on the existence and scope of any national diabetes strategy. Comparing data both between and within countries presents the idea of competition in healthcare, but one based on all stakeholders challenging themselves to do better within a culture of using measured results for learning and improving, rather than for penalising or rewarding. Based on the evidence, action plans and individual targets can be set locally to improve diabetes care. It is hoped that as the Changing Diabetes Barometer initiative grows, and countries collect more and better data, it will also be possible to collect more qualitative information on issues relating to the quality of life of the individual person with diabetes, as affected by the care they receive (see Chapter 3).

understood that investing in diabetes screening and more effective care will, within a relatively short time, result in lower medical costs and less lost productivity. As populations age and diabetes incidence rises, it is even more pressing to halt the loss of peoples skills and experience from the working population. This First Changing Diabetes Barometer Report sets the foundation for this work with a computer simulation analysis of direct costs in one country where the evidence is available: the UK (see Chapter 5). From this it can be shown that better control of blood glucose can reduce lifetime healthcare costs by 13%. If early diagnosis is linked with enhanced treatment then these costs are reduced by as much as 21%. This leads to the nding that because of reduced spending on the complications of diabetes, up to 48% of the available funds used for enhanced treatment of diabetes could be spent not on complications, but on improved care at an earlier stage of the disease. That would have enormous impact on maintaining and improving the patients quality of life. The presence of sufcient numbers of adequately-trained healthcare professionals, and also of IT staff presents a challenge to data collection but also an opportunity for the Changing Diabetes Barometer initiative to be of assistance. Many Healthcare Ministries around the world have supported initiatives to train more doctors, nurses and healthcare auxiliaries, particularly in identifying diabetes at an early stage, and in treating it to limit development of complications. The Changing Diabetes Barometer, presenting information based on data collected around the world, will highlight the points of healthcare systems where the need is greatest. Through encouraging efforts to make information more readily available and comparable, the initiative will help build competence through learning from others and the free exchange of best practice examples.

Key issues
Many developing countries have very acute problems. These include If it is to call for a higher quality of diabetes care, the Changing Diabetes Barometer has to take full account of the many factors which challenge diabetes care in different parts of the world. The economic cost of diabetes is well documented, but still the message is not well lack of nancial resources, availability of healthcare professionals, and availability of adequate and up-to-date training for them. Further challenges may include cultural attitudes, access to medicines and hospitals, and the sheer enormity of the size of populations and distances involving.

Here, even though data on diabetes care may be even more limited, the opportunity is great to make a start in documenting what is done, so that steps can be taken to develop it. Other countries experiences can offer solutions, and there is no need to re-invent. Access to adequate care is, of course, also a challenge for the undiagnosed and poorly treated proportions of the diabetes population in the developed world. Again, this needs to be measured, understood and successful ways to tackle the problems examined, shared and implemented. Finally, as effective self-management of diabetes is one of the keys to maintaining people with diabetes in greater comfort and better quality of life for more years, the elements inuencing its success or otherwise of this also need to be measured and tracked. The Changing Diabetes Barometer and its future use of DAWN-inspired surveys to gather information on unmet needs and ways to improve the procces of care can play a vital role.

A call to action
This is the rst Changing Diabetes Barometer Report. It sets an agenda for change, addressed to everyone in the diabetes community. To make diabetes care more comprehensive and more effective, we rst have to know what is already in place and we have to track how the ght against diabetes is progressing. But collecting data is not just an academic exercise. It must be studied and used, to learn from existing actions, encouraging constructive competition to build a better approach to diabetes care policy, clinical and personal decision making. The Changing Diabetes Barometer project is just beginning. Join it and together we will change diabetes.

1. time to work together

1.1 Diabetes a story of missed opportunities
Diabetes is increasing at alarming rates worldwide, with devastating effects on both the individual and society. The International Diabetes Federation (IDF) currently estimates that in 2007, 246 million people worldwide have diabetes1, representing 6% of the population aged 20-79. This number is expected to reach 380 million by 2025, or 7.3% of the adult population. Many of these people with diabetes will develop serious medical complications, for which costly hospital treatment can only alleviate but never cure.
50% are diagnosed
If 50% of them receive care

Figure 1: The rule of halves

Among all people with diabetes

only 6% would have a succesful outcome

a barrier between patients and their goal of living normally

The root of the problem of diabetes is our inability, throughout the world, to offer truly adequate care. While many excellent healthcare professionals, care policies and treatments are available, the hard fact is that only a very small proportion of people with diabetes are able to benet fully from them. As a chronic disease, diabetes takes many years to run its course. During that time the availability of high quality treatment, which is limited for a variety of reasons, means that many suffer a far worse quality of life than they could, facing a barrier between them and their goal of living normally and making their full contribution to society. Earlier diagnosis could substantially reduce the proportion of those whose diabetes has already caused other medical complications by the time of diagnosis. A high proportion of people with diabetes are not even diagnosed, so do not benet from treatment at all and many who are diagnosed fail to reach treatment targets.

and 50% of those achieved treatment targets and 50% achived desired outcomes

The rule of halves was developed in studies of hypertension2,3,4 and applies equally well to diabetes. For diabetes, the rule of halves tells the story of missed opportunities along the care pathway and the diminishing effectiveness of current attempts to combat the disease. If, out of all people with diabetes, only 50% are diagnosed, many do not receive adequate care and many do not reach treatment targets, then only a tiny proportion manage to live well with their diabetes.

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Figure 2: Number of people with diabetes (PwD), worldwide, 2006

...we are driving diabetes care in the dark

Because of the missed opportunities to keep people with diabetes liv-

70 60 50 40 30 20 10 0 Europe North America Latin America Western Pacic South East Asia Sub-Saharan Africa Middle East and North Africa

ing well for longer, society sustains massive losses, both through direct costs to healthcare systems in treatment of the medical complications, and through even greater indirect costs to national economies in terms of lost productivity and social welfare. All this is in addition to the costs to individuals and their supporters in terms of human suffering and loss of earnings. The challenge is growing as the worlds population ages and adopts less healthy lifestyles. It is particularly acute in developing countries, which are estimated by the IDF to contain 300 million out of a world total of 380 million people with diabetes by 2025. Figure 3: World prevalence of diabetes and impaired glucose tole rance*, 2007 and 2025 (ages 20-79)
2007 Diabetes prevalence (%) Number of people with diabetes (millions) IGT prevalence (%) Number of people with IGT (millions) 6.0 246 7.5 308 2025 7.3 380 8.0 418

Not diagnosed PwD (millions) Diagnosed but not treated PwD (millions) Treated PwD (millions)

Source: IDF Diabetes Atlas 20061 and Novo Nordisk *People with impaired glucose tolerance (IGT) have a signicant risk of In 2007 the actual proportions being diagnosed, receiving treatment, achieving targets and achieving desired outcomes in diabetes varies signicantly between different parts of the world and different treatment regimes. Calculating them is dependent on the level of condence that is attached to the data at each stage. Published data from national registers have the highest level of condence, but in much of the world data available is no more than anecdotal. Without reliable information we do not know how we are progressing in the ght against diabetes, we are driving diabetes care in the dark. We need transparent measures to enable the weak points of the cycle of diabetes to be identied, prioritised and action taken whether in prevention, diagnosis, or effective treatment. Diabetes care will not be improved signicantly, especially in the face of this growing pandemic, until a solid foundation of knowledge has been built about the extent and effectiveness of care today. Only when outcomes are measured and compared can weaknesses in strategies, treatment methods and care systems be diagnosed and improvements made. The achievements of countries or regions which have already made a start can offer benchmarks to inspire change. developing type 2 diabetes. Source: IDF Diabetes Atlas 20061

1.2 Meeting the challenge

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only when outcomes are measured and compared can improvements be made
The present collection of disparate national initiatives for data collection calls for a concerted approach to gather information and track progress. The aim is, however, not solely to gather information; this is only the rst step. Instead, an international consensus is needed on how to develop measurable and comparable improvements throughout the whole cycle of diabetes care. Scrutinising and dening exactly what data would best inform healthcare payers, and policy-makers, decision-making will enable sound investment for the future. If national initiatives can be encouraged, and results and best practices be shared openly, it will make compelling information for decision-makers and help bring diabetes out of the dark. People with diabetes would experience an improved quality of life, savings to the healthcare systems through avoidance of diabetes complications could be re-channelled and the whole economy would benet from a more productive workforce. The Changing Diabetes Barometer initiative is a response to this urgent and pressing need for concerted action.

The UN Resolution was a major achievement for the IDF-led Unite for Diabetes campaign, as for the rst time, national governments had acknowledged the seriousness of the threat in comparison with infectious diseases like HIV/AIDS, which had for so long attracted more concern. Changing Diabetes is a global initiative of Novo Nordisk, dedicated to making a difference to people with diabetes how it is treated, how it is viewed around the world, and how the future of this disease can be controlled. As well as scientic and medical research, real change must involve many participants and actions, through government, worldwide public health policy, healthcare professionals and industry. A milestone Global Changing Diabetes Leadership Forum was organised by Novo Nordisk with the support of the IDF in March 2007, just three months after the adoption of the UN Resolution. It brought together almost 200 participants from politics, government, international organisations, patient organisations, healthcare, academia and the media. Its objective was to spark a worldwide change, by inspiring all these different participants in diabetes care to make real improvements in their own countries. As a result of the Leadership Forum, Novo Nordisk made a commitment to publish annually a Changing Diabetes Barometer. The Changing

1.3  The Changing Diabetes Barometer in context

Efforts to raise awareness of the serious potential of the diabetes pandemic are beginning to take effect. On 20 December 2006 the United Nations (UN) General Assembly adopted a Resolution on diabetes which called on all UN member states to take action, including developing national policies for the prevention, treatment and care of diabetes in line with the sustainable development of their healthcare systems, and taking into account the internationally agreed development goals. The Resolution was based on the recognition that diabetes, with its chronic nature and debilitating and costly complications, is a major threat to these goals, and that strengthening public health and healthcare delivery systems is critical to achieving them.

Diabetes Barometer would gather information on global progress in the ght against diabetes. It would also be a source of international inspiration, as it would provide healthcare providers and policymakers with insight into the best practices which enable improvements in diabetes care.

Starting point scarce data

Since the Forum, Novo Nordisk has collected information based on available data on diabetes care from 21 countries, through its afliates throughout the world. This survey suggested that, of the 21 countries one third had no data on treatment indicators like HbA1c, blood pressure and lipid levels one third did not have data on incidence rates and

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only a few had systems in place tracking important key indicators in a dynamic registration database that enabled consistent follow-up on a national scale. Working with others through the Changing Diabetes Barometer initiative, Novo Nordisk seeks to increase measuring, support learning and bring about improvements in diabetes care around the world. Former Mexican Health Minister Dr Julio Frenk: Ministers of Health need to tell Ministers of Finance that this is not just a humanitarian issue Its a fundamental economic issue, since we will not grow our economies, we will not become competitive, we will not be able to participate in the global economy unless we have a healthy workforce. This is much more than a public health crisis; its a security issue, because diabetes weakens the fabric of society. Professor Elizabeth Teisberg: The companies I have talked to have found that the cost of their employees poor health is 2.5 3 times higher than the direct cost of health benets. So not investing in quality care is a short-sighted view and will end up costing more. Professor Jean-Claude Mbanya: You can imagine how excited we are in the diabetes world to be part of something that will meet the needs of our healthcare providers and especially the patients. This Barometer is very timely because of the UN Resolution on diabetes passed in December 2006, which specically says that countries should develop national diabetes programmes according to the level of their healthcare systems. If we can develop a tool which countries can use to map their progress in developing and implementing their programmes, that would be most welcome to the national diabetes communities.

Novo Nordisks Commitment

Reducing average HbA1c results in fewer severe cases and an increased number of patients in good control. For example, reducing average HbA1c from 7.5% to 7.0% by 2012 in Japan could result in 450,000 more patients in good control saving up to 125,000 patient life years. In the United States, where over 2.5 million people have HbA1c over 10%, reducing the average HbA1c of 11.8% to under 10% would save up to 2 million patient life years by 2012. Novo Nordisks commitment to improving patient outcomes will work through a three-part mechanism. First it will establish the facts on not only the extent of diabetes worldwide which is well known through the IDF and other sources but also the extent, methods, efciency and outcomes of diabetes healthcare interventions. Second, it will communicate the information and encourage dialogue between healthcare policy-makers and payers. This will engage the support of healthcare providers and should also contribute to increased public understanding and awareness. The third phase is to use the information to stimulate and support national initiatives and projects which will improve diabetes care.

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2. key issues
2.1  Development of the Changing Diabetes Barometer concept
In September 2007, the Changing Diabetes Barometer Advisory Board explored the key issues for the Changing Diabetes Barometer, including the challenges for the initiative and the opportunities it has and brings to the diabetes community. These suggestions lead to the idea of competition in healthcare, but this The Advisory Board identied four main themes which intersect with the Changing Diabetes Barometer initiative, and indeed with diabetes care more broadly. These are: Economics of diabetes care Capacity and competence of diabetes healthcare professionals Access to care Empowering people with diabetes and improving self management. Central to the debate is the dual cost of diabetes to the individual in terms of suffering, and to the economy in terms of the direct nancial costs of healthcare, social costs and the indirect losses to produc tivity. The economics of care need to take full account of the value to the patient. Therefore, aiming to increase the value for patients means that care delivery needs to be reorganised over the full cycle of care. Making improvements throughout the cycle will contribute to improving the quality of life of the person with diabetes the equation between a potentially long sentence of inconvenience, discomfort and pain, or a period of enjoyable and valuable life-years. This is after all the aim of diabetes care, to ensure that people with diabetes live longer and better-quality lives. Professor Elizabeth Teisberg: The core issue in healthcare is improving the value of healthcare delivery the value of health outcomes relative to the cost of achieving them. Lessons can be learnt from other branches of medicine; for example, following publication of outcomes in coronary bypass surgery improvements mortality has been reduced by 41%; and spectacular increases The costs of diabetes are very signicant to both the individual and to the wider economy, and they are growing. As a chronic, non-communicable disease, diabetes places increasing burdens on both, in direct healthcare costs and the indirect costs of lost productivity, social care and nancial losses to the individual. Using new approaches to recording diabetes care will contribute substantially to improving the care itself and reduce the costs, both nancial and personal. The Changing Diabetes Barometer will enable healthcare providers to benchmark their practices with those achieving better results, and help both payers and policy makers to optimise the use of resources and achieve better value. Better diabetes care will generate an improved return on the investment constituted by spending on healthcare. Reliable, comparable recording will provide the substance for analysis and drive learning, leading to identication of the sections of the chain of care provision where improvements can be made. Improvement at these key points will then support primary prevention; support secondary prevention which reduces or delays complications, reduce hospital costs, reduce premature mortality, and release spending for other needs. The concept offers major advantages for everyone concerned the payers and policy-makers, the healthcare professionals, and most of all for the person with diabetes. must be constructive competition based on all stakeholders challenging themselves to do better within a culture of using measured results for learning and improving, rather than for penalising or rewarding. in life expectancy (average 18 years to 33 years) have been achieved in cystic brosis, when publication of results led to changes in care practices1.

publication of results led to changes in care practices

2.2 The economics of diabetes

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recording diabetes care will reduce the costs, both nancial and personal

Direct costs of healthcare

In many countries healthcare spending has risen faster than the growth in GDP per head of the population3 and is taking an increasing share

Diabetes prevalence is increasing rapidly in both developed and developing countries; the IDF estimates a rise from 246 million people with diabetes worldwide in 2007 (6% of adults aged 20-79) to 380 million by 2025 (7.3%)2. The Western Pacic region has the highest number of people with diabetes (67 million in 2007), while North America has the highest prevalence (9.2%). The ageing of populations in both the developed and developing world is expected to result in increased prevalence of diabetes. Unless it is matched by increased healthcare spending, ageing also increases the development of the long-term complications of diabetes, with associated high treatment costs. The other key factors for diabetes are by now deeply entrenched the trend towards Western-style processed diets and reduced physical exercise, which together contribute to overweight and obesity. These factors are involved even in developing countries, where traditional lifestyles are receding as economic realities encourage people to move from rural to urban areas in search of employment. Industrialisation in the emerging economies of the world makes this pattern likely to continue.

of governments, employers and individuals budgets. Treatment and strategies for prevention of diabetes worldwide in 2007 are estimated at US$ 232 billion; rising to US$ 302.5 billion by 20254. The growing prevalence of non-communicable diseases in relation to infectious diseases means that the increasing call on governments healthcare budgets may cause critical competition for nance within healthcare and between that and other public services.

the magnitude of expenditure should demand that progress be measured

While in low-income countries almost all diabetes expenditure goes toward drugs to lower blood glucose, in industrialised countries up to 75% of diabetes healthcare costs are spent on hospital treatment for complications. The magnitude of expenditure and its variation should demand that progress be measured and tracked, but this is currently not the case.

Indirect costs to productivity and to the individual

The social and economic consequences of diabetes take very different forms in different parts of the world. The costs of professional treatment and care in the developed world can be estimated in market terms. But in the developing world much of the cost is inuenced by distorted prices in the health care sector, the fact that people cannot afford treatment and care and therefore do not get it, and that a very large part of the economy takes place in the informal sector (unregistered economic activity, bartering, subsistence farming, and home production of food and services). The reason for taking this into consideration is that diabetes hits people at the very core of their ability to generate economic means to sustain their living standard. The medical and psychosocial effects of diabetes also give rise to costs to society. Diabetes can involve sub-optimal performance of employees at work, time off work through illness or treatment requirements, premature retirement through disability and premature death. Its cost to national productivity depends on the state of evolution of the economy and the size of the population of working age, as can be seen from the example of ve countries with differing characteristics. Comparing China and India, for example, very similar productivity losses in absolute terms have a much greater impact in India in relation to GDP.

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Figure 4: Effect of diabetes on productivity in ve countries

2007 Productivity loss, US $bn Productivity loss, %GDP China 20.5 0.6 Denmark 1.3 0.4 India 20.4 1.9 UK 3.3 0.1 USA 41.4 0.3

Much evidence has amassed in the last 20 years7 that effective control of blood glucose, coupled with control of blood pressure, prevents or reduces complications. New studies discussed in Chapter 5 of this report are now demonstrating the potential gains in terms of life expectancy and delayed development of the diabetes related complications which can follow earlier diagnosis of diabetes and intensive control of blood glucose. The studies show the balance which can be achieved between investment in more effective care at an early stage of diabetes, and the return on that investment. The return is not only a vastly improved quality of life for the person with diabetes, for a longer time, but also signicant cost savings in both the direct and indirect costs outlined above, because of prevented or delayed incidence of complications. Professor Ashok Kumar Das: Treating diabetes appropriately is cheap, and not treating it is costly.

Source: Economist Intelligence Unit

Diabetes also causes substantial indirect costs, which are widely agreed to exceed by far those of healthcare provision. People with diabetes suffers lost earnings if they have to give up work; and also face the prospect of a reduced pension. Their care may be provided by publicsector services, or by family members, who may also incur loss of earnings to provide care.

indirect costs far exceed those of healthcare provision

At this personal level, most industrialised countries have organised medical insurance schemes and/or government-supported healthcare services, so nancial strain is not added to the physical suffering caused by diabetes. But in many developing countries, people with diabetes are obliged to pay for their own medical treatment costs. For example, up to 25% of household income in India is required to cover these costs, and 30% of poor households in China attributed their poverty to healthcare costs6. The current capacity and competence of diabetes healthcare professionals presents both a challenge and an opportunity to this initiative. In order for Changing Diabetes Barometer recording systems to document the performance of diabetes care and to improve it, one of the main concerns is ensuring the presence of sufcient numbers of adequatelytrained healthcare professionals. Numbers of doctors and nurses are far from adequate in many develop-

2.3 R  aising the capacity and competence of diabetes healthcare professionals

Redressing the economic balance

Attention is focusing on how to contain the pattern of spiralling costs and increasing suffering. The Changing Diabetes Barometer initiative to consolidate present efforts and improve recording of diabetes care worldwide will clearly contribute. It will identify weak points in the chain of primary prevention of diabetes diagnosis treatment of diabetes and prevention of complications treatment of complications so that steps can be taken to improve them.

ing countries. In contrast, in developed regions, some of the case studies in Chapter 4 show that some doctors have been initially resistant to change, and suspicious of collecting data which might be used to criticise their performance. Ensuring adequate numbers of healthcare professionals is an issue to be addressed by national Finance and Health Ministries. In the specic context of diabetes, a number of initiatives are already under way, e.g. programmes to train doctors, nurses and healthcare auxiliaries in India

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and to provide extra diabetes expertise in Sweden (see Chapter 4). The Changing Diabetes Barometer initiative and the other efforts of the international diabetes community, particularly of the IDF and its activities related to World Diabetes Day and the UN Resolution, will help by drawing the attention of the worlds governments to the diabetes pandemic and the need for the medical resources to curb it.

The data system should encourage active participation on the basis that it will offer doctors improved insight into what is working well, and not so well, in their own procedures. Anonymity in data reporting will probably be needed, at least initially - those setting up data registers will need to evaluate the national conditions to decide whether or not it is essential, or possibly whether individual reporting centres can be identied after a time lag.

the Changing Diabetes Barometer will offer and share solutions as well as raising awareness of problems
The medical profession will naturally ask for justication for collecting and sharing diabetes treatment data. The Changing Diabetes Barometer initiative must show that taking part will create benets rather than burdens. It must be explained and guaranteed that sharing the results of their healthcare interventions is not intended to trigger judgement. Instead it is intended as a source of reference, to show the achievements of other sister organisations / hospitals / primary care centres against which each doctor or care centre can benchmark their own achievement. The Changing Diabetes Barometer will offer and share solutions as well as raising awareness of problems, building on the experience of those who have already met problems in their own national data systems and overcome them. In setting up these systems, the organisations which have already gone through the process are adamant that data collection should not increase the workload of healthcare professionals, and that it should be gathered in the process of normal routine consultations. Contributing medical staff should be encouraged to analyse their own data and act on it, and not merely to supply it into a storage le. Professor Sofa Gudbjrnsdottir: The challenge is not so much to get the data collected, but to get the healthcare professionals to learn to look at their own data regularly, and check its quality. This is a way to drive the process. We have recorded data for ten years but just doing that does not help.

Dr Julio Frenk: One challenge we shouldnt minimize is the danger of data providers feeling exploited, and the other is the failure to use the data. It is important, too, that the data they supply should show not just that a measurement has been made, but its results. For example, the UK Quality and Outcomes Framework (QOF8) requires measurement not only of the proportion of patients having HbA1c measured in the last 15 months, but of the proportion achieving HbA1c less than 7.5%. Only if outcomes are shown can others know what can be achieved. There is evidence from countries which already have a national diabetes register that doctors become keen to adopt the best practices of their colleagues and compete actively to raise the standard of their own performance. This very genuine commitment among the medical profession to deliver the best care possible for their patients, and their desire to address challenges of capacity either relating to number of healthcare professionals or their knowledge, suggests potential for a powerful partnership with this initiative.

practitioners and patients will be able to drive up their own standards

Through benchmarking, best practice sharing and open exchange of knowledge and results, practitioners and patients will be able to drive up their own standards. With the Changing Diabetes Barometer providing an accepted framework for dialogue on diabetes care all stakeholders will be able to engage in debate about how to allocate resources and prioritise attention.

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Information Technology
Barriers which could limit development of the Changing Diabetes Barometer is inadequacy of IT systems and suitably trained personnel to support databases (particularly limited in some developing countries), and securing funding for data collection again a case of early investment bringing promise of a later return. Investment is also needed in mechanisms to ensure data validity to remove any suggestion that it could be manipulated. Where no IT systems were operating before the register, this can be taken as a great opportunity to set up systems using standardised le formats and software. The availability of information through technology including computing capacity, internet and mobile phones can now be used to increase greatly the empowerment of people with diabetes, and support the efforts of healthcare professionals, especially in relation to monitoring self-management and compliance. Dr Jonathan Betz Brown: Some of the things we identify as barriers are actually opportunities. The fact that in most countries no outcome data and process data has been gathered, is a huge opportunity to do it in a standardised way so that there can be comparisons. .The power of data to change behaviour seems partly related to whether an incentive is involved, but sometimes the data themselves are so embarrassing that they create their own incentive. While it can be very hard for countries with no data to begin the process, experience from Italy (see Chapter 4) has shown that data collection can in time win the support of healthcare policy-makers, for developing a culture of constructive competition and patient empowerment which will combine to improve patient care and eventually reduce costs.

2.4 Expanding access to care

Special problems of developing countries
Treatment of diabetes and its assessment in developing countries presents major problems: of nancial resources, availability of healthcare professionals and the infrastructure to support them, availability of adequate and up-to-date training for them. Efforts may be challenged by cultural attitudes and resistance to change, face restricted access to medicines and hospitals, and struggle with the sheer enormity of the size of populations and distances involving unreliable supply chains. A large majority of people in developing countries are forced to pay themselves for some or all of their medicines, or simply not to have them. For many years attention to helping developing countries has been focused on controlling infectious diseases like HIV-AIDS, malaria and tuberculosis. Yet the growth of chronic diseases already imposes substantial costs and the World Bank estimates that they will become the leading cause of death in low-income countries by 20159. Rising life expectancy for all age groups, lower fertility rates, better control of infectious diseases, and changing lifestyles with more smoking, bad diet and lack of exercise, all indicate that non-communicable diseases will become a major problem to developing countries. Health systems will need to be adapted to cope with the growing numbers of elderly people who will require long-term care alongside the present focus on addressing acute infectious diseases. About three-quarters of the disability burden related to non-communicable diseases, including diabetes, in low- and middle-income countries occurs among those between the ages of 15 and 69, at the peak of their economic productivity. Chronic illness in developing countries often forces families to nance

Professor Elizabeth Teisberg: Measuring and analysing outcomes does pay for itself, in time we cant afford not to do it. Improvements in healthcare will drive down specic costs.

treatment themselves, or to take family members out of employment or school to care for relatives. The World Bank estimates that the direct costs of diabetes are between 2.5 to 15.0% of annual health care budgets, depending on local prevalence and the sophistication of available treatments. Among low- and middle-income countries, total diabetes-related costs are highest in Latin America and the Caribbean,

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where the economic burden of diabetes has been estimated at US$ 65 billion annually. The limited resources for diabetes care allocated by Health Ministries in many developing countries has also led to limitations on glucose selfmonitoring, which is advocated by current good practice guidelines. In many countries glucose meters and glucose testing strips are unavailable or restricted to people on at least twice-daily insulin; urine testing strips are an alternative which could be made much more widely available10. One of the major courses of action to improve this situation is to provide education and other initiatives to promote lifestyle changes, in particular aimed at improving diet and exercise, and offered in a range of settings e.g. in the community, workplaces and schools. A key opportunity exists to screen people for diabetes and other non-communicable diseases during normal medical checkups, and to provide appropriate treatment at as early a stage as possible. The underlying, major initiative to underpin these efforts is to encourage and achieve higher incomes through economic growth. The Changing Diabetes Barometer can contribute to these actions by measuring the scale of the problem, particularly in relation to identifying people with undiagnosed diabetes, and those in need of secondary prevention steps to reduce the onset of complications. Many relevant practical initiatives have been put in place under the Novo Nordisk World Partnership Project to address the individual problems of developing countries, using partnerships with concerned people and organisations at the local level. These projects commonly faced an initial lack of support and political will from governments towards diabetes prevention, and many countries had no national diabetes programme .
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At a political level, the World Diabetes Foundation has also supported many initiatives to raise awareness of diabetes and its burden among policy-makers and the healthcare community in developing countries including support for countries developing diabetes practice guidelines, e.g. in sub-Saharan Africa, and mobilisation of multiple support for the UN Resolution on Diabetes. The relevance of the Changing Diabetes Barometer to these massive practical, nancial and political problems in developing countries is twofold. At an international level it will be a powerful argument to convince governments and policymakers of the vital urgency of confronting the growing impact of diabetes. At a national level the initiative will present practical counsel on how to build better care. Obviously not all the experiences will be relevant or appropriate to all, but within the Changing Diabetes Barometer are best practices and ways to achieve improvements, which can be selected to help in a wide variety of other countries.

Early diagnosis, screening and prevention

Access to appropriate care is, of course, also a major issue in the developed world for those who are at risk but unaware, undiagnosed, or receiving inadequate treatment. The initial format for the Changing Diabetes Barometer will include measures of BMI (as an indicator of prevention efforts), diabetes prevalence and average HbA1c (an indicator of the quality of diabetes treatment). These three rst indicators are meant to be a starting point for collection of data on the whole course of diabetes. Against the background of the increasing prevalence of diabetes, and its slow progression, attention has to be focused on the possibilities to intervene and delay or halt development of subsequent stages. In particular, early diagnosis has been shown to reduce the development of the complications of diabetes. Primary prevention actions taken with people showing impaired glucose tolerance (IGT) can reduce or prevent its progression into diabetes. Intensive treatment after diagnosis can reduce or delay the appearance of complications this is secondary prevention. All of these possible interventions are clearly benecial to

Healthcare provision was often ineffective due to lack of equipment, facilities and infrastructure. The initiatives included a distance learning programme for doctors in Bangladesh, strengthening diabetes clinics in Tanzania and training in insulin management for primary care physicians in Malaysia.

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overall quality of life for the individual12. Effective medical intervention is therefore essential in order to slow down or halt progression of the disease at each of these stages.

2.5 I mproving self-management assessing non-clinical indicators

Effective diabetes care requires a partnership between the healthcare professional team and the person with diabetes. This involves offering education to the patient so they can fully understand their disease, and the impact of their actions upon it; providing appropriate and timely information; and shaping the encounter between doctor and patient so the patient is involved and empowered to take control of their diabetes, rather than allowing it to control them. The Changing Diabetes Barometer needs to develop ways to measure and communicate best practice on effective self-management and the provision of psychosocial support for people with diabetes.

Eventually the Changing Diabetes Barometer should attempt to assess the important area of the undiagnosed and the population at risk of diabetes more fully, as well as those already being treated. It is not considered economically feasible to screen whole populations for signs of diabetes or IGT, but opportunistic screening targeted at those sections of the population which are likely to be at risk can be highly effective. Diabetes development can often be halted by simple lifestyle changes and in particular control of overweight and obesity by diet, increased physical activity, by drug treatment or a combination of these methods. However simply distributing information on healthy lifestyles is inadequate to change behaviour effectively unless other components in society promote an active lifestyle and healthy eating. The IDF has developed a large-scale population approach to the prevention of Type 2 diabetes, aiming to result in important health changes for a large percentage of the population. Some countries have begun to develop and implement a national diabetes prevention plan in order to do just this and involve many groups including schools, religious and ethnic communities, industry (marketing, investment policy, product development) and the workplace (health promotion within the working environment). The rst of these was Finland, whose Development Programme for the Prevention and Care of Diabetes in Finland 2000 201013 includes a population strategy aimed at promoting the health of the entire nation; an individualised strategy for those at high risk; and a strategy of early diagnosis and management for those with new-onset Type 2 diabetes. It builds on the 58% reduction in the incidence of diabetes through dietary and exercise advices achieved in the Finnish diabetes prevention study where patients who met 80% of their diet, exercise and weight loss goals did not develop diabetes14.

Patient self-management support and the DAWN initiative

Less than half of the people with diabetes reach an optimal level of health and quality of life despite availability of effective medicines. Based on a 2001 study of more than 5,000 people with diabetes and 3,000 diabetes healthcare professionals in 13 countries, the DAWN programme established new knowledge about the real-life barriers to optimal self-management. It also studied ways to address the decits in the access to psychosocial support from the healthcare system and community17. Successive international DAWN summits involving all key stakeholders in diabetes led to the DAWN Call to Action18, which is used as a foundation for advancement of team-based patient-centred self-management supportive diabetes care and more recently to a focus on large-scale implementation initiatives. Key to the process is increased education and information for people with diabetes, including the encouragement of expert patients who can pass on their knowledge to others with diabetes, to healthcare providers and the community in general creating more general awareness and understanding. Many DAWN initiatives have explored the most effective options in providing information for people with dia-

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betes, including use of language-independent illustrations, IT systems and computer software supporting the use of DAWN questionnaires in everyday diabetes care. Psychosocial support is also vital to help people take on the task of managing their long-term illness. The DAWN MIND translational research programme (Monitoring Individual Needs of people with Diabetes) is working through 12 leading diabetes centres around the world to help support people with diabetes and their carers to cope with the psychological issues that arise in developing individual care plans, and encourages personal participation in the decision-making involved. Coaching in self-management is a critical area which can be taught both to medical students and to expert patients. The original DAWN study of 2001 showed that many patients experience emotional stress related to their diabetes, and that more than half of healthcare providers do not feel equipped to adequately identify these issues in their practice17. Experience from DAWN on the results of national surveys of patients wishes and needs have been considered in the development of many large scale diabetes care initiatives, e.g. Poland, Germany, Denmark, Taiwan, Italy, Mexico, Colombia, Argentina, Greece, Japan, the Netherlands, Russia, Ukraine and the USA. The original surveys are being followed by expert analysis of how far the national healthcare systems are taking account of patients experiences and concerns. In Italy, supervised by the Ministry of Health, national DAWN surveys in adults, young people and migrating populations are providing the foundation for the national diabetes strategy. The DAWN programme
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Surveys
Surveys and questionnaires, as exemplied by DAWN surveys, can be used to gather information from individuals on non-clinical issues like access to medicines and quality of self care. The Changing Diabetes Barometer should consider the use of surveys to supplement hard biochemical data especially to provide information on issues such as access to medicines, lifestyle, quality of life, and quality of self care. Dr Jonathan Betz Brown: Most of those countries are quite poor, so survey methods are quite inexpensive. Surveys give you control over how the indicators are dened, how the data are gathered and how the population is dened. Access to insulin has been studied by IDF in three separate surveys since 199219; which found very wide variation in its availability worldwide, and also in the availability of blood glucose test strips. Urine testing strips are more available, but their use seems to be decreasing without a corresponding rise in blood testing strips, which suggests that increasing numbers may not be testing at all. The 1997 survey had shown that insulin, syringes and needles were often not available because of price and transportation problems. Only 48 out of 120 countries surveyed could give access to insulin at all times to those who needed it. Access to insulin was worst in Africa and best in Europe. Dr Julio Frenk: There is a great value in international comparison, especially given the huge differences we are going to nd around the world, especially in prevalence and incidence. We can also nd some overall indicators of the performance of the healthcare system, and apart from the actual outcomes, things like whether theyve had blood pressure measured tells a lot about access to the healthcare system.

(Diabetes Attitudes, Wishes and Needs)

aims to improve patient outcomes by understanding patients as individuals. DAWN was launched by Novo Nordisk in 2001 in partnership with the IDF and an international advisory panel16. As it has already established worldwide the advisability of including considerations of diabetes patients experiences and needs in national programmes for diabetes care, it is only natural to draw on the knowledge acquired by the DAWN programme in developing the Changing Diabetes Barometer.

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2.6  Summary of key issues improving quality of life for patients

Developing the Changing Diabetes Barometer requires many factors to be taken into account; all contributing to the very incomplete picture now available of diabetes care throughout the world. The economic impact of diabetes, both direct and indirect, is clearly a main motivator for improved care not only for its implications for national health budgets but also on the person with diabetes. The economic aspect makes plain the unpalatable truth that millions of people in the world currently stand little chance of attaining the level of diabetes care that is now possible for the relative few. Building the Changing Diabetes Barometer is essential to put in place the mechanisms to measure diabetes care, and demonstrate the resulting returns on investment in that care, in order to improve it. Closely linked to the question of economic cost is the availability of adequately trained healthcare professionals in sufcient number to offer improved care and also numbers and quality of trained IT staff. Many initiatives have already gone some way to improving medical staff numbers and infrastructure, plus innovative measures like training relatively unskilled young workers to assist in basic healthcare screening, but many more are needed. The Changing Diabetes Barometer will identify the key areas where more input is needed health maintenance and prevention of diabetes, its treatment or prevention of complications, and provide a mechanism for learning from others to drive improvements. Access to care is of course a very major issue, especially in the developing countries and also in situations where migrating and itinerant populations lack the basic stability to support medical treatment of a chronic disease. Actions like the Changing Diabetes Barometer can provide valuable evidence with which to inuence the course of national and international politics, in mobilising resources to improve healthcare for these very numerous, very vulnerable people.

Finally, effective self-management is one of the keys to achieving good diabetes control, and adding both more years to life and, importantly, life to years. It does, however, require signicant investment in education and support the Changing Diabetes Barometer and its use of DAWN-inspired surveys to gather information on unmet needs and ways to improve the process of care can play a vital role. Improving lives is the goal. In the Changing Diabetes Barometer initiative it is essential to remember that data on clinical parameters such as HbA1c are intermediate outcomes. They give a guide to the progression of the disease, but it is not something which is felt by the person with diabetes. Through appropriate education and information people with diabetes can be encouraged to understand these measurements better, but they will naturally always be more interested in hard outcomes including the physical complications of the disease, the impact of both their treatment and their disease on their daily life and their prospects for productive independent living. Too often the concept of quality of life is dismissed as an additional luxury to be considered once basic survival is ensured. In chronic disease treatment, however, it is the central aim. We say this because keeping the person with diabetes living as normally possible, for as long as possible, is what we are trying to achieve; it is the sum of all the economic, clinical and psychosocial factors mentioned above. Improving diabetes care aims to ensure that people live with, rather than suffer from diabetes and we must continue to move towards this goal.

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3. the changing diabetes barometer

3.1  What is the Changing Diabetes Barometer?
The Changing Diabetes Barometer is a framework for measuring progress in the ght against diabetes. It will provide healthcare professionals, patient organisations, politicians, institutions and media with valuable information and inspire and support them to improve diabetes care, improve quality of life for people with diabetes, reduce costs and ultimately save lives

Shine a light on the ght against diabetes the Changing Diabetes Barometer will describe what progress is being made in the ght against diabetes
Collecting information is not just an academic exercise. Instead, the Changing Diabetes Barometer will communicate information based on data gathered and maintained locally in as many countries as possible to highlight the prevalence of diabetes, and the type, extent and effectiveness of diabetes care. The Changing Diabetes Barometer will describe what progress is being made in the ght against diabetes. The aim is to build a deeper, common understanding of the disease and its impact, both in different countries and between different population groups. Through this the Changing Diabetes Barometer will provide a context in which healthcare providers and payers can analyse the performance of their own efforts, benet from the example given by others and drive improvements in diabetes care. Its objectives, therefore, are to; Through measuring and comparing information in all of these areas, illustrate the link between quality of diabetes care, reduction in complications and socio-economic costs thus providing all stakeholders with the opportunity to make informed choices; improve treatment through inspiring learning based on measuring and comparing results as all stakeholders develop a clear picture of the current quality of diabetes care in their country; and inspire others to follow best practice examples. While several excellent initiatives in collecting and interpreting data on diabetes treatment already exist, there are differences in methodology, and many more countries have sparse data or none at all, so the overall starting point is poor. The opportunity is there for other countries to use this initiative to learn from these examples of good practice, and for countries can focus their efforts where they are most needed and understand where improvements can be made. Prevention the incidence of diabetes and success or otherwise of public health initiatives to prevent type 2 diabetes Progress how early the disease is diagnosed among people with diabetes (and whether they have already developed diabetes complications) Treatment how well they are cared for. The Changing Diabetes Barometer initiative seeks to impact the entire diabetes care pathway. It divides this pathway into three categories:

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the Changing Diabetes Barometer to highlight best practice to inspire change. Joint efforts are needed from many stakeholders medical professionals, policy-makers, international organisations and industry - and a step-by-step approach.

lenge of diabetes, the Changing Diabetes Barometer aims to encourage collection of national or regional data on three important measures: BMI (as an indicator of prevention efforts), diabetes prevalence, diagnosis rates and presence of complications at diagnosis, (an indicator of disease progress among the population and in individuals) and the percentage of people with diabetes in various HbA1c ranges (an indicator of the quality of diabetes treatment). Eventually the Changing Diabetes Barometer should include more parameters to build a more complete understanding of both the direct costs of diabetes treatment and the indirect costs to the individual and to society.

You cant manage what you cant measure measuring what diabetes care is already in place, and how effective it is, sets the starting point for improvement
Ideally national data should be collected and expressed in ways which are comparable between countries. It will then be possible to make meaningful comparisons; both between countries in relation to diabetes care, and within countries in relation to other healthcare and economic priorities. Such comparisons are vital for health policy decisions and for healthcare professionals to improve the level of diabetes care by incorporating the best practices of others.

Invest to save once the improvements begin, so do the rewards

The Changing Diabetes Barometer will add new momentum to the

The possible parameters to be measured are many and divide into three categories: Strategy the number of countries with a diabetes strategy, moving on in the longer term to assess the quality of strategies and the scale of organisations in place to implement them Measures the number of countries with updated data on prevention, progress and treatment, in the longer term examining in more detail the proportion of the population with BMI above 25, the percentage of people estimated to have diabetes who are diagnosed and the incidence of complications already present at diagnosis, and the percentage of diabetes patients in good control as measured by a series of clinical indicators Systems the number of countries that track the measures above on a continuous basis; in the future examining the number of clinics participating, the measures tracked and the frequency of testing and publication of results Beginning at a practical level, in addition to gathering information on activities at a national level to plan and measure responses to the chal-

collection of data on national healthcare provision for diabetes, and through that to evidence-based advocacy. Once the starting point has been measured, it will be possible for healthcare policy-makers to see how and in what ways improvements can be made to their services. And once the improvements begin, so do the rewards in terms of both reduced personal suffering, and cost to the economy. It will be possible to divert nancial and skills resources to other aspects of medicine. Employers will experience less productivity lost through illness of employees. Social care costs will fall. In essence: measuring what diabetes care is already in place, and how effective it is, sets the starting point for improvement. The Changing Diabetes Barometer is both a report and a concept. It starts from very limited valid data from just a few countries. It will use this data to understand the potential for improved diabetes care, and then to encourage other countries and regions to learn from the early experiences and build their own data systems. At the world level there are opportunities to do that through the International Diabetes Federation and the UN Resolution on diabetes; both of which focus attention on diabetes as a global health challenge.

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3.2 Inspiring and driving change

The Changing Diabetes Barometer will work at two levels inspiring change at the international level and driving change at a national level.

At both international and national levels, the aim is to improve the measurement and accessibility of comparable information.

The international level inspire change Measure, compare; learn and improve improve the measurement and accessibility of comparable information
At both levels, parameters to be measured over the successive stages of disease will be dened and progressively increased in number, so that comparisons can be made both within a country over time, and between countries. The parameters will measure the extent of diabetes, diabetes strategy and diabetes care, covering the three stages of prevention, progress and treatment. In terms of the parameters being measured at the national level, what will be shown at the International level as time progresses is the change At the international level the Changing Diabetes Barometer aims to inspire national stakeholders to measure the impact of their efforts and learn from international best practice examples. It will monitor progress across countries to encourage constructive competition and, in the future, create an international baseline on the progress of prevention, progress and treatment.

Inspire change

Best Cases

International level

Drive change
Society

Patient

Providers

Industry

Payers

National level

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occurring. For example, ideally it will show an increase in countries with national strategies and well resourced organisations to implement them, reduction in the proportion of the population with BMI over 25 and therefore classied by WHO as overweight; and it will show a rise in the proportion of diabetes patients with HbA1c under 7%. It will also show increases in the quality of measuring systems in place including frequency, coverage and publication of results. However, it should be noted that diabetes prevalence will continue to increase as long as mortality is falling, and with improving treatment this will be the case. Incidence of diabetes can only be controlled by prevention, not by treatment and there will be an inevitable delay in seeing the benet of such public health interventions. The Changing Diabetes Barometer will be an increasingly potent and inuential resource as it gathers further information. National policymakers will nd it increasingly useful as a source of best practices and to stimulate healthcare providers to improve their performance. As analysis of the ndings continues, more insight will be achieved on the exact stages of diabetes care provision which are most in need of reinforcement in order to achieve the greatest medical, social or economic improvements. More parameters will be added as the Changing Diabetes Barometer progresses. In particular, later it would be useful to include further indicators to measure the population at risk, including ethnic origin, lifestyle (diet and exercise); and for those already diagnosed: quality of care as shown by surveys with questions like whether or not diet or feet had been checked, and the availability of insulin. The incidence of complications with diabetes as a co-existent condition would also ideally be measured. Information at the national level will be accessible to a wide range of
G E Generate and monitor measures and targets Establish incentive systems and clinical decision support N Nurture the registration and capture of data C H A Create awareness Help facilitate dialogue with payers and policy makers Activate healthcare providers and people with diabetes

The national level drive change Sharing information drives innovation stimulate informed dialogue
At the national level the Changing Diabetes Barometer initiative will stimulate informed dialogue on the necessity of measuring the treatment progress. As data resources are developed covering participating countries, including the indicators of diabetes prevention, progress and treatment, plus information on the existence and scope of any national diabetes strategy, then action plans and individual targets can be set locally to improve diabetes care.

users, and its structure will enable direct comparisons. The information will focus on improving patient outcomes and quality of life, while at the same time addressing the concerns of providers and payers. It will become a valuable tool to help national policy-makers to design plans and targets appropriate for their own healthcare systems.

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3.3 Organisation
Role of Advisory Boards share experience and best practices
The members of the International Advisory Board have been brought together by Novo Nordisk to include experts from throughout the world with experience in the development of national diabetes registers, in health economics and the politics of healthcare provision. Their role is to contribute their experiences in order to develop the concept and implementation of the Changing Diabetes Barometer. Board members have been invited to share experience and best practices in relation to the aims of developing measurability and transparency. They have also made contributions on the barriers and challenges which they can foresee or have already overcome in their own countries. Finally, the Board has offered ideas for further development and implementation, and for communicating its message to stakeholders throughout the world. National Advisory Boards will be established with diabetes associations, local Novo Nordisk delegates and payers, policy makers and key opinion leaders in the respective countries. The role of these National Advisory Boards is to ensure that progress is made and to make sure that best practice from the international level is being implemented in the best possible way in each country.

Investigator, Kaiser Permanente Center for Health Research, Portland, Oregon Professor Ashok Kumar Das (India) Director and Professor, Jawaharial Institute of Postgraduate Medical Education and Research (JIPMER), Pondicherry; Additional Director of Health Services, Government of India Dr Clare Davison (UK) GP and Diabetes Lead, Newham Primary Care Trust, and member, MODEL Group Dr Julio Frenk (Mexico) President, Carso Health Institute and Institute of Health Metrics, Seattle; former Secretary of Health, Mexico Professor Sofa Gudbjrnsdottir (Sweden) Sahlgrenska University Hospital, Goteborg and Head of Swedish Diabetes Register Professor Masashi Kobayashi (Japan) Executive Vice President and Director of University Hospital, University of Toyama Dr Nicky Liebermann (Israel) Executive Director of Community Medical Services Division, Clalit Health Services

International Advisory Board Members contributing to this rst report

Dr Richard M Bergenstal (USA) Executive Director, International Diabetes Center, Park Nicollet, Minneapolis Dr Jonathan Betz Brown (USA) Chair, IDF Task Force on Diabetes Health Economics and Senior

Professor Jean-Claude Mbanya (Cameroon) Vice Dean and Professor of Medicine and Endocrinology, University of Yaound Dr Wendy Rosenthall (Canada) Medical Advisor, Diabetes Centre, Trillium Health Centre and member, Global Task Force on Glycaemic Control

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Professor V Seshiah (India) Former Professor and former Head, Department of Diabetology, Madras Medical College

possible at this stage to include data from all the 21 countries from which people have given support to the project. Instead the rst report takes the opportunity to highlight the achieve-

Professor Elizabeth Teisberg (USA) Associate Professor, Darden Graduate School of Business Administration, Charlottesville, Virginia Dr Giacomo Vespasiani (Italy) Director of Centre of Studies and Research, and former President, Associazione Medici Diabetologi (AMD), San Benedetto del Tronto

ments of a sample of countries India, Israel, Italy, Japan, Sweden and the USA which developed national or regional diabetes registers some years ago and so have amassed experience of their challenges and benets. The report includes accounts of these initiatives and their achievements and also the data for these countries relating to: - BMI - diabetes prevalence (percentage) - HbA1c (percentage in dened ranges)

3.4  The Changing Diabetes Barometer the future

Three Changing Diabetes Barometer Reports are to be published at 12month intervals. It is anticipated that future Reports will become more comprehensive as the initiative unfolds, and initiatives in more countries take up the aim of collecting and disseminating data on their diabetes care systems.

The rst report also examines some Novo Nordisk initiatives which are contributing to improving diabetes care in other countries (India and Sweden).

Second Report
The second report aims to include:

First Report, November 2007

This rst report describes the concept of the Changing Diabetes Barometer initiative and the objectives for its future development. It focuses on the different international and national ambitions, and examines the key issues which have to be addressed, not just for the Changing Diabetes Barometer but for its wider aim of improving diabetes care worldwide. Because it is the starting point, the First Report acknowledges the scarcity of data relating to diabetes care systems from around the world, and the wide variation in its quantity, quality and coverage. In order to ensure the validity of data, the Changing Diabetes Barometer Reports only include data which has been published. It has not therefore been

Status update on Changing Diabetes Barometer activities 2007-2008 - Status on Changing Diabetes Barometer activities in pilot countries - Summary of Advisory Board recommendations in 2008 Status update on monitoring and tracking of progress of key indicators internationally - Developments in key indicators where available - Perspective on human costs (patient outcomes) - Perspective on direct healthcare costs Further examples of best practice including information on the Changing Diabetes Barometer Scholarship Publication details for the subsequent progress of the Changing Diabetes Barometer initiative will be determined at a later date.

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3.5 C  ountries included in the Changing Diabetes Barometer survey

The 21 countries included in the rst stage of the Changing Diabetes Barometer initiative are: Australia, Belgium, Brazil, Canada, China, Denmark, France, Germany, India, Israel, Italy, Japan, South Korea, The Netherlands, Poland, Russia, Spain, Sweden, Turkey, UK, USA

Figure 5: The 21 countries included in the Changing Diabetes Barometer survey

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changing diabetes at the national level

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4.  national examples of diabetes care

4.1 Learning from best practice
Diabetes care and the extent to which it is recorded both vary signicantly in different parts of the world in many countries recording of patient outcomes is non-existent. This First Barometer Report examines initiatives from six countries which have begun systematic recording and analysis of data on the care available for people with diabetes. Within these case studies can be found insight on the different ways the problem could be tackled, the attitudes of participants and other interested parties, the difculties encountered and the various solutions used to overcome them. Some of these examples now have over ten years experience, and are showing the benets by improved results. Some are able to estimate cost savings through improved care, although the data to establish the full extent of economic benets will not be available for some years to come. The countries whose initiatives contribute case studies are India, Israel, Italy, Japan, Sweden and the USA. The case studies include data on the basic diabetes indicators: Figure 6: Summary of example initiatives for data collection
Who initiated system India Diabetes specialists Who runs system Diabetes specialists / Internists HMO Clalit Health Services Diabetes specialists Associazione Medici Diabetologi Diabetes specialists / Ministry of Health / industry Who supports system Ministry of Health and Family Welfare / State Governments Government, from start Diabetes specialists; government only beginning to show interest Diabetes and other specialists and their societies / Ministry of Health / industry Swedish Board of Health and Welfare, Swedish Association of Local Authorities and regions, Swedish Diabetes Federation US Department of Health and Human Services, Centers for Medicare and Medicaid Services Data collection started 1970s Main purpose Epidemiology studies Improve detection, follow-up and control of people with type 2 diabetes in HMO Improve quality of specialist care Achieve targets in improved diagnosis and care Encourage registration of data on glycaemia, other risk factors, process measurements and diabetes complications for evidence- based development of diabetes care Improve the quality of health care through measurement, transparency and accountability HCPs involved Diabetes specialists / Internists Diabetes specialists, primary care physicians and nurses Diabetes specialists Diabetes and other specialists and primary care physicians *BMI is classied by the WHO international classication. In recent years, there has been some debate over whether the cut-off points should be adjusted to take account of the increasing evidence that associations between BMI, percentage of body fat, and body fat distribution vary in different ethnic groups. A WHO Expert Consultation (Singapore, 2002) concluded the proportion of Asian people with a high risk of type 2 diabetes and cardiovascular disease is substantial at BMIs lower than the existing WHO cut-off point for overweight (= 25 kg/m2). However, the cut-off point for observed risk varies substantially, so the current WHO BMI cut-off points are retained as the international classication. However in detailed studies intermediate cut-off points have been added for reporting purposes, to aid international comparisons.
#

- BMI (an indicator of those at risk)* - Diabetes prevalence# (an indicator of the diabetes burden) - HbA1c (an indicator of the quality of diabetes treatment) Future Changing Diabetes Barometer Reports will comment on initiatives in other countries, and include published data on their diabetes populations and their care.

The data quoted from the IDF Atlas will be an underestimate of total diabetes prevalence, as they refer to people with diabetes aged 20-79.

Israel

HMO Clalit Health Services Diabetes specialists Associazione Medici Diabetologi Diabetes specialists / Ministry of Health / industry

1996

Italy

2000 Data management system: 1998; data registries: 2006

Japan

Sweden

Swedish Society of Diabetology

Swedish Society of Diabetology

1996

Diabetes specialists, primary care physicians and nurses

USA

Corporate employers / health insurers

National Committee for Quality Assurance non-prot QA organisation

1990

Diabetes and other specialists and primary care physicians

34

4.2 Case studies

Indian people are one of the population groups with a particular genetic susceptibility to type 2 diabetes. The rapid rise in diabetes prevalence

India
Key learning Starting to measure can make a difference to policy makers and patients even in the most difcult settings.

in the Indian sub-continent is also linked to rapid urbanisation, with associated changes in lifestyle towards lower exercise levels and increased use of processed foods. The typical onset age of type 2 diabetes is also notably lower (by about ten years) than in Western populations. The focus for policy-makers is increasingly on non-communicable diseases,

Outline Numerous academic studies of the prevalence and treatment of diabetes, preparations for a national diabetes programme but no coordinated data collection. Figure 7: Key indicators for India

of which diabetes is central. Government interest in addressing the diabetes pandemic is strong, including funding diabetes research and free healthcare in the public hospitals for those who cannot afford it, with free supply of insulin and other drugs. Some people prefer to pay for care in private hospitals, but health insurance is scarce. National guidelines for the management of type 2 diabetes6 were developed

BMI, %

Underweight BMI <18.5 32.9

Normal BMI = 18.5 24.99 62.5

Pre-obese BMI = 25-29.99 3.8

Obese BMI >30 0.7

in 2005 by the Indian Council of Medical Research and WHO, with the aim of introducing uniformity of approach throughout the country. The guidelines introduce measures to address all stages in the course of diabetes. The guidelines are addressed to the family physicians and GPs who care for most people with diabetes. They include a number

Source: WHO 20061

People with diabetes aged 20-79, million 40.85

Diabetes prevalence

Population aged 20-79, million 659.57

Prevalence % 6.2

of targets, which include ideal BMI of 20-23, and ideal HbA1c of <7%; HbA1c of 7-8% is considered satisfactory and >8% is unsatisfactory. Initiatives Diabetes prevalence in India has been studied and documented since

Source: IDF Diabetes Atlas 20062

HbA1c <7% N/A HbA1c 7-9 % N/A HbA1c >9% N/A

HbA1c, % of people with diabetes

the 1970s. The earliest study was carried out by the Indian Council for Medical Research and screened about 35,000 people; nding 2.1% / 1.5% prevalence in urban / rural populations, rising to 5% / 2.8% in urban / rural populations aged over 40 years. Further studies came from different parts of India, showing a higher prevalence in southern India than in other regions7. The most comprehensive picture comes from Chennai, where its 2003 rural epidemiology study8 screened over 26,000 people and followed the development of their complications, in a region which already had sound epidemiology studies over the previous 20 years.

Background India is sometimes described as the diabetes capital of the world with about 41 million people with diabetes and prevalence up to 15% in some urban populations . An equally large number of people have impaired
4

glucose tolerance; many of whom will develop type 2 diabetes in the future . It is estimated that without major initiatives being taken, the
5

number with diabetes will approach 80 million by 2030. Primary care physicians provide care for most people with diabetes.

35

Figure 8: Diabetes prevalence in Chennai, South India 1989-2004

Challenges One of the main challenges in preparing India to meet the enormous demands of the growing population with diabetes is to involve all sectors

15% 12% 9% 6% 3%

- healthcare professionals, government organisations, the media and the private sector. The proposed national diabetes control programme (which will also cover cardiovascular diseases and stroke) is expected to be formally launched toward the end of 2007, and will focus attention of policy-makers on diabetes, and provide a framework for state actions in establishing new clinics and diabetes prevention centres. However it faces severe constraints through lack of nancial resources

0% 1989 1995 2000 2004

and of trained healthcare professionals. The Chennai project will make a substantial contribution, and also a number of other initiatives are training auxiliary healthcare staff to work in the community and identify those most at risk from diabetes. One of these is the Saantwanam project, supported by Health Action by People, the Government of Kerala poverty eradication mission, and the State Bank of India. More generally, the National Rural Health Mission (2005-12) pledges increased resources to public health initiatives, including appointment of accredited village social health activists, to promote a healthy lifestyle9. Since inception, over 225,000 people have been screened for diabetes and at risk subjects referred to physicians. The screening also included blood pressure, BMI and body fat. Cholesterol screening is a recent addition.

Source: after Mohan

The national government began planning a national control programme for diabetes in the 1980s, and pilot actions started in a limited number of districts, but funding was not maintained. The programme focused on the need to identify those people at high risk in order to prevent diabetes; to diagnose and treat early in order to prevent complications, to ensure equal opportunities for people with diabetes, and to rehabilitate those suffering from disabling complications. Against the background of calls from WHO for countries to develop national strategies, the India Council of Medical Research has worked with the WHO Collaborating Centre in Chennai and the World Diabetes Foundation towards an Indian national diabetes control programme. During the last four years the joint programme at Chennai has given training in diabetes treatment, prevention and care to almost 800 doctors from Kerala, Gujarat, Tamil Nadu, Karnataka, Andhra Pradesh and Orissa; plus 350 nurses, and over 20 educators in self-care for people with diabetes. The programme eventually plans to train 3,000 doctors and over 1,000 community nurses to implement the national guidelines for prevention and treatment of diabetes. It will also offer short training courses in podiatry, nutrition and dietetics, and patient education.

The rst graduates from the Saantwanam project trained in health screening

36

Achievements It is probably too soon to detect improvements in the treatment of diabetes because of actions taken. In India the numbers affected are so great, and the pandemic still growing. However diabetes is now a very high priority to both government and healthcare professionals, and steps like the extra training programme will make a substantial difference. Doctors are seeking continuing medical education, and welcome training. Recording of data is as yet uncoordinated into a national structure which could be the basis of a Changing Diabetes Barometer initiative. However India is on the brink of a more coordinated approach to protecting public health, particularly in relation to awareness of non-communicable diseases. It also has great academic strengths. The future The future is seen as a big opportunity to improve the quality of diabetes care. Professor Ashok Kumar Das: The future is bright we will have a lot of initiatives, improved control, we have analogues and a lot of other new drugs. We may not have enough healthcare workers today but tomorrow we will; we are training many doctors. The number of diabetes improvement programmes in the country exceeds the number of days in the year.

Figure 9: Key indicators for Israel

Underweight BMI <18.5 N/A Normal BMI = 18.5 24.99 N/A Pre-obese BMI = 25-29.99 39.3 Obese BMI >30 22.6

BMI, %

Source: WHO 20061

People with diabetes aged 20-79, million 0.34

Diabetes prevalence

Population aged 20-79, million 4.3

Prevalence % 7.8

Source: IDF Diabetes Atlas 20062

HbA1c <7% 40.0 HbA1c 7-9 % 46.0 HbA1c >9% 14.0

HbA1c, % of people with diabetes

Source: Quality Indicators for Community Health Care in Israel, 20073

Background Israel does not have a specic national diabetes strategy. Treatment for people with diabetes is provided by four health maintenance organisations (HMOs), of which the largest is Clalit Health Services. Clalit has operated the Diabetes in the Community Programme since 1995, towards improving the diagnosis, treatment and control of type 2 diabetes for people within Clalit Health Services.

Israel
Israels population is a mixture of races and minority groups. When the Key learning Reorganising diabetes care with teamwork as the central principle and sharing data on treatment across healthcare professionals and patients can improve outcomes and reduce costs. Outline Data collection programme initiated and run by a leading health maintenance organisation, Clalit Health Services, involving type 2 patients treated mainly by primary care physicians, with support from diabetes specialists. programme began in 1995, 70,000 people within the Clalit Health Services were known to have diabetes. This represented a national prevalence of between 5-10%, but it was especially high in nomadic groups and among people aged over 60. The programme aimed to improve diabetes control and that of blood pressure and blood cholesterol. Overall, it would aim at building an improved model for the treatment of chronic diseases in the community clinic.

37

Initiatives Government support was obtained from the beginning of the programme, in the light of the St. Vincent agreement and due to concern at the high mortality linked to diabetes and other chronic disease which had been shown in the mid-1990s. In 1996 a diabetes register was introduced in each of Clalits 1,300 clinics; these were computerised between 1998 and 2000 and all primary care physicians were invited to contribute data on their diabetes patients. The computerised data on each patient was then available to every clinic in the Clalit Health Service. Diabetes specialists were the main driving force behind the development of new clinical guidelines for the treatment of type 2 diabetes, adapted from the ndings of the UK Prospective Diabetes Study (UKPDS), and these have been updated every ve years. National quality indicators were introduced in 2002 to monitor the improvement in the quality of treatment. At the same time as the development of the diabetes registers, major advances were being made in education; for both medical professionals and people with diabetes. Regular workshops giving a uniform programme of supplementary education in diabetes were offered to the different diabetes-related healthcare professionals in all districts. This was the rst programme to train team members from different medical disciplines together, within Clalits compulsory programme for continuing medical education. The response from primary care doctors was at rst defensive, partly because they feared criticism. They were later encouraged when they saw the potential for improving patient outcomes. Speciallytrained regional dieticians supported the doctors and nurses in individual clinics; advising them how to back medical advice with guidance on diet and lifestyle. The training workshops also provided leaets and videos for doctors and nurses to pass on to their patients, helping them to participate more fully in their treatment decisions. When the programme began, some people with diabetes were afraid of the stigma of being diagnosed and treated, fearing it would reduce their prospects at work. Later their response improved as they began to feel more active partners in their care.

Challenges The key issue in improving diabetes care in Israel was how to engage primary care physicians and encourage them to supply patient data. The problem was overcome by a combination of feedback from their data, educational opportunities and access to greater understanding of the possibilities for improved patient care, and satisfaction with improved performance. Working as a team with other medical disciplines was also stressed. Another major challenge was that of the differing cultures of the various ethnic groups. At the beginning of the Diabetes in the Community Programme, diabetes care for nomadic groups was inadequate. The realisation that healthcare needs to take account of culture has enabled new approaches, especially in advice on diet and lifestyle. For example, Bedouin settlements now have mobile health teams that can go to homes, give dietary advice and check on medication. Use of dieticians, trainers and opinion leaders from the same ethnic origin to support the programmes has made a material difference; together with new guidelines on working with the beliefs and way of life of particular ethnic groups. Achievements In 2007, many more people with diabetes have been diagnosed within Clalit than were known in 1995, bringing the total in Israel to about 220,000 (the IDF number in Figure 9 is for a limited age range). In 1995, between 15-33% had HbA1c tested and 44% had blood pressure tested. The aim of the programme has been to improve the monitoring of people with diabetes to 70% receiving these essential tests. The main difference made by the programme has been to set up multidisciplinary teams involving primary care physicians, nurses and dieticians, with access to advice from diabetes specialists, hospital care and specialists in other disciplines (e.g. renal care, cardiology) as needed. These teams have in turn contributed to greater empowerment of people with diabetes, through passing on information and encouraging greater participation. The key indicator results show signicant improvements in both the measurements being performed, and the outcomes obtained.

38

Figure 10: Proportion of diabetes patients receiving key test measurements

The database allows the results to be examined on many levels: for any physician, for any clinic, any region and also nationally. Each clinic is benchmarked quarterly against the others. Clalit believes that health-

100% 80% 60% 40% 20% 0% 1995 1999 2001 2002 2003 2004

care professionals have responded very positively and are showing keen competition to offer the best services, which in turn has improved patient outcomes. The improved monitoring of HbA1c and LDL cholesterol has been carried out with the aim that all patients with more than one risk factor should achieve an LDL level of less than 100mg/ml LDL. In 2007, over 50% of diabetes patients have reached this target. The proportion of patients with HbA1c over 9% has fallen progressively from 40% in 1995 to 14% in 2007. Competition is so intense that physicians are now seeking more frequent publication of data and in particular the details of their patients in least adequate control of diabetes, so performance can be improved in relation to other clinics. The programme has also shown substantial benets in terms of the

% tested for HbA1c % tested for LDL cholesterol

Source: Dr Nicky Liebermann, Clalit Health Services Figure 11: Improvement in HbA1c, 1995-2007

reduced costs of healthcare for people with diabetes who have been given more effective treatment. Cost containment of about 5% per year has been shown between 2000 and 2005; mainly through reduction in hospital days. The costs for non-diabetic patients showed a slight rise over the same period. Clalit estimates a payback period of 6-8 years

100% 80% 60% 37 40% 20% 30 0% 1995 70k patients HbA1c > 9 2001 150k patients HbA1c 7-9 2005 187k patients HbA1c 7 30 28 40 46 14

to recover the investment in more effective care. In its own experience, improved care began in 1995; break-even came in 2001, and cost savings have been achieved since 2004.

35

40

Source: Clalit Health Services

39

Figure 12: Diabetes-related healthcare costs, per patient (US$)

Outline Programme aimed primarily at improving the quality of specialist diabetes treatment, initiated and run by Associazione Medici Diabetologi, the

800 25% 700

Italian professional association of diabetologists. Figure 13: Key indicators for Italy
Underweight BMI <18.5 3.3 Normal BMI = 18.5 24.99 54.1 Pre-obese BMI = 25-29.99 33.6 Obese BMI >30 9.0

600 BMI, % 500

Source: WHO 20061

400 2001 2002 2003 2004 2006 2007 Diabetes prevalence Population aged 20-79, million 44.0 People with diabetes aged 20-79, million 3.85 Prevalence % 8.7

Source: Dr Nicky Liebermann, Clalit Health Services Dr Nicky Liebermann, Executive Director of Medical Services, Clalit Health Services: If you lead a medical system towards correct medical practice, you are always rewarded with cost containment. The future In 2008 Clalit is starting a new programme for diabetes prevention, using computer analysis of lifestyle data, eventually to cover 250,000 patients. It is also starting a programme to examine the effects on the development of long-term complications of conventional and more effective treatments. A third new programme is to identify, test and treat populations at high risk of diabetes. Background
HbA1c, % of people with diabetes

Source: IDF Diabetes Atlas 20062

HbA1c <7% 44.0 HbA1c 7-9 % 43.8 HbA1c >9% 12.2

Source: 2007 AMD Annals3 (weighted average of Type 1 & 2)

Italy has a number of initiatives relating to the care of people with diabetes and other chronic diseases. These include the National Healthcare Plan (2006-8) and laws which make regional councils responsible for promotion of uniform healthcare and for organising its provision, including identifying people most at risk from diabetes. The National Commission for Diabetes and Disease Management is working to de-

Italy
Key learning Introducing a data collection system that secures anonymous data exchange and can easily be applied on top of physicians existing patient records can encourage healthcare professionals to share data and improve care through personal benchmarking.

velop models for the care of diabetes patients and to compare the diagnostic, therapeutic and assistance methods developed within Italy with the aim of reducing variability. The DAWN project (Diabetes Attitudes, Wishes and Needs) has also been instrumental in developing the Italian approach to diabetes care.

40

Italy has about 680 diabetes treatment centres of various sizes; around 200 are very small. About 60% of diabetes patients are treated by specialists in clinics or hospitals, and the remaining 40% are either treated by GPs or go without treatment. It is estimated that about a further one in three people with diabetes are undiagnosed. All of these treatment centres are registered with AMD the Associazione Medici Diabetologi. Italy has rather more doctors and specialists than many countries and it offers specialist care to a high proportion of patients. It is not following the pattern of the USA and the UK to encourage the treatment of people with diabetes as far as possible in primary care.

cally to convince centres to use common software to measure their own quality of care, and then to share data with colleagues. Two different approaches were used; described as bottom-up and topdown. Both start with the same raw data and the same national indicators. The bottom-up approach has been employed in 95 diabetes centres all over Italy, covering about 140,000 people with diabetes. Data from these can be submitted to AMD using the centres own clinical les with AMD software. The top-down approach has been piloted in all 11 diabetes centres of

The AMD has since 2000 been developing the Annali quality indicators in diabetes care. The project and the publication gather, interpret and disseminate information on the quality and outcomes of diabetes care. The aim is to ensure measurability and transparency, to provide a true picture of scope and burden of diabetes, and to establish national targets and benchmarks. The project does not consider itself a national diabetes register. Instead, its main function is to improve the quality of care for patients coming into diabetes treatment centres. The AMD Annali do not attempt to give a complete epidemiological account of all patients with diabetes in an area and their outcomes, but examine the quality of specialist care. Ultimately it is hoped to join the Annalis resources with the database of primary care physicians, which will give a complete picture. Initiatives Work to develop the Annali database began in 2000, and brought in information from 100 diabetes centres. AMD invited all of the clinics to contribute data, and its perception is that those taking part are a reasonable cross-section in terms of performance. The initiative to start the database was taken by AMD, which owns, maintains and develops it, and guarantees the fair use of data. The rst task was to identify the key indicators needed to measure quality of care, and secondly to decide how to use them. It was important politi-

the Le Marche region, covering about 10 years of data for each person, thereby contributing a total of about 61,000 patient-years. The top-down system requires all centres to use the same clinical le and software. This approach began in 2002 with the delivery and setup of regional software, data transfer from each computerised case report to regional software, and training of operators. The next year the rst centres were connected to the regional network, and a regional clinical database was set up on a protected server. By 2004, other diabetes outpatient centres were becoming involved, and in 2007 clinical data for each patient is becoming available online, which helps them to monitor treatment progress of their own disease. The AMD started with a list of 46 quality indicators to demonstrate the availability of diabetes care, which include processes, intermediate outcomes and nal outcomes. The indicators were identied on the basis of an earlier study performed by AMD with the purpose of exploring the most important indicators of diabetes care in Italy. AMD published a list of information elds necessary to measure the indicators. In the bottom-up approach, for each eld, the software can export data in a given format regardless of how the clinical record was made. So from different clinical records, the same export le can be obtained. This made it possible to derive the same basic data from les in different formats from all over Italy. Two software approaches were compared, with almost identical results. The data is extracted automatically from doctors records; no inputting or other extra work is needed.

41

Challenges The problems involved in setting up the data collection system focused on technical issues relating to the software, and on the attitudes of doctors and people with diabetes.

15.4% in type 1. Indicators can also be used to show average values (in a clinic or a region) for the main clinical parameters, or can compare average outcomes from different treatment types. Figure 14: Using quality indicators to show progress toward treatment targets

Many of the doctors invited to participate were reluctant either because they feared criticism of their effectiveness or that the data would be sold, e.g. for its information on their prescribing habits. AMD has found that the doctors are happier to participate now they can see the use of the data in the Annali. AMD has also published rules on anonymity and on fair use and publication. It was essential that AMD, a national medical association, was the initiator of the project and the owner of data, as individual centres would not have shared their results directly with each other. Many people with diabetes have also been reluctant to seek information to enable them to question doctors decisions. AMD believes that in the future, patient inuence will increase and so it is essential that both doctor and patient have information and become more equal in the discussion of treatment.

Proportion of diabetes patients achieving HbA1c of 7% or less

27.9% 45.1%

Type 1 27.9% achieving target

Type 2 45.1% achieving target

Proportion of diabetes patients achieving HbA1c of 6.5% or less 15.4%

One further challenge is the need to avoid other organisations duplicating the initiative the objective of gathering high-quality data is too important and too large to allow the effort to be diluted by duplication. Achievements The use of indicators enables physicians to evaluate the performance of their individual centre by benchmarking against the national database. This benchmarking is personal in the sense that the individual clinic cannot identify which other clinics are performing well or badly. One of the major achievements of AMD in creating the Annali is in standardising the form of the information, because doctors compile data primarily for clinical reasons rather than for records, so it can vary. The actual indicators can be used to show the proportion of patients reaching specied targets. For example, HbA1c targets of <6.5% are set by a recent guideline - achieved by 27.2% in type 2 diabetes and

27.2%

Type 1 15.4% achieving target

Type 2 27.2% achieving target

The indicators show considerable variability in the outcomes achieved by different centres. This is a measure of the variation in performance quality, so the aim is to converge toward a gold standard. Le Marche region shows an average HbA1c level 0.5% lower than the average for the rest of Italy evidence of the effect of sharing results and improving practices which could not have been gained without the Annali project.

42

Figure 15: Variation in HbA1c results between Italian diabetes centres

liament and circulation to all Italian politicians, hospital directors and specialists, and to scientic meetings. Italian specialists share the concern of many countries that the rising numbers of people with diabetes will cause a crisis in healthcare funding. The data is of great importance

HbA1c % 10

in safeguarding the resources available for diabetes care from governmental cutbacks. Until a few years ago, the future of diabetologists in Italy was in some doubt as many politicians and administrators thought, on the basis of similar changes in the USA and UK, that diabetes patients could be cared for by GPs. The evidence of the Annali has contributed to the recognition of the key role of diabetes specialists. Professor Giacomo Vespasiani:

Centres

The more the patients are involved, the more that they can be convinced that management of diabetes is in their own hands. This is the greatest problem for the future and the real opportunity to change

It is important for doctors to see indicators of their own performance and compare them with national standards. The Annali enable doctors to check their results, but as the centres are not named, they are not open to be judged. It is also possible to follow the performance of individual patients and individual clinics over time. The Annali do not aim to provide a league table so that people with diabetes can choose the best-performing centre. Instead, the aim is that all centres take steps to improve their performance; to reduce quality variations; which should improve care for all. A fully open ranking would be likely to cause some centres to withdraw from the system. It is not therefore possible at present for the best-performing centres to publicise their best practices; only to indicate that improvements are possible. In the same way, the Annali do not aim to change treatment guidelines, although the evidence they collect may lead to changes in the future. The aim is rather to measure adherence to the guidelines. Extensive efforts have been made to communicate the results of the initiative to decision and policy makers, including presentations to Par-

relationships between doctors and patients. Self-monitoring is vital. It means a better quality of work for doctors; and a better quality of life for patients. The future It is AMDs hope that the bottom-up and the top-down approach will spread to all clinics in Italy and that top-down networks can be developed in other regions as well as Le Marche. The advantage of the top-down approach is that all information is common; that clinical les are available throughout network, and that patients will be able to have access to their own data, which will improve patient empowerment. The target is to involve 250 centres by 2011, which will more than double the number of patients from 140,000 in 2007, up to 300,000. AMD is negotiating with the national society of GPs to be able to include the GPs diabetes care database in the Annali. AMD intends to develop regional Annali, with regional targets on outcomes (e.g. foot ulcers and other complications). Finally, further analysis is beginning to reveal many other types of information on the links between different types of treatment centres and the various outcomes.

43

Japan
Key learning Improving transparency on treatment costs and patient outcomes through data gathering initiatives can be a strong vehicle for facilitating dialogue between payers, policy makers and healthcare professionals. Outline Set of parallel research initiatives aimed at improving prevention and treatment of diabetes and reduction of complications, with multiple support from healthcare professionals, government departments and industry. Figure 16: Key indicators for Japan
Underweight BMI <18.5 11.5
1

on the treatment of diabetes and on its impact, with particular regard to the costs of treating diabetes complications. Since 2006 the Ministry of Health, Labour and Welfare has nanced a number of research initiatives which are part of a strategic research objective in public health, and diabetes is one of the rst two elds selected. The research projects are highly relevant to the development of an information base for diabetes care in Japan, and deal with prevention and treatment of diabetes development and with methodology for collecting and handling data on healthcare and its outcomes. Diabetes prevalence is increasing signicantly in Japan; estimates of people with diabetes together with those who have impaired glucose tolerance now reach 16.2 million, or 13.3% of the total population10. The combination of a marked increase in the age of the population, genetic predisposition and a substantial shift from agricultural to urban
Pre-obese BMI = 25-29.99 20.3 Obese BMI >30 3.1

BMI, %

Normal BMI = 18.5 24.99 68.9

lifestyle suggest that diabetes prevalence will continue to rise. Japan has nationwide medical healthcare insurance available to all citizens. In Japan about 80% of people diagnosed with diabetes are in the care of GPs and only 20% with specialists. Patients tend to move from

Source: WHO 2006

Diabetes prevalence

Population aged 20-79, million 97.33

People with diabetes aged 20-79, million 6.98

Prevalence % 7.2

GPs into specialist care as their disease becomes more complex, and many are then disinclined to return to primary care. Initiatives

Source: IDF Diabetes Atlas 2006

Three relevant initiatives are running currently: a data management system (JDDM, introduced by Novo Nordisk), the J-DOIT clinical study (govHbA1c 7-9 % N/A HbA1c >9% N/A

HbA1c, % of people with diabetes

HbA1c <7% N/A

ernment-supported) and the JDCP database study (involving healthcare professionals and supported by the diabetes and other specialists societies). The rst initiative started in 2000 with the organisation of the JDDM study group of diabetes specialists throughout Japan. It made use of a prototype computerised system (CoDiC) based on Novo Nordisks Novo Net, which enabled the development of data management software for diabetes treatment which was appropriate for Japans clinical practice.

Background Japan has no overall diabetes strategy, although individual prefectures (regional governmental bodies) have devised strategies. Toyama prefecture, for example, has operated a strategy since 1996, involving lifestyle education for people with diabetes, those with impaired glucose tolerance (IGT), and healthy people; screening and follow-up of IGT and diabetes patients, and support for patients and their families. The government is now increasingly supporting the gathering of evidence

44

JDDM collected clinical data from the 60-70 specialists with up to 35,000 patients, covering a range of diabetes indicators including HbA1c. The average HbA1c levels achieved were relatively low (7%) compared to results from other countries and were matched by the results from GPs in Japan. It is suggested that the monthly clinic visits by Japanese people with diabetes may enable more active intervention than the less frequent visits and HbA1c measurement received by patients in many western and Asian countries. However, 66% of the patients in Japan still failed to meet the HbA1c target of less than 6.5% recommended by the Japanese Diabetes Society11. The data is published to enable the clinics to benchmark and compare their results with the best achievers.

The JDCP study has for ve years been collecting a database on 12,000 patients from all over Japan. It examines basic indicators including BMI, waist circumference, blood pressure, HbA1c, blood lipid levels and many others. All diabetes specialists in Japan report into the system. Challenges The main problem has been the lack of available funding for data initiatives, computer equipment or studies. A group of specialists asked government for support but the rst funding for any of these initiatives came from industry. Government has welcomed the results of the studies, especially the large JDDM study, and seeks more evidence. Improvement of GPs knowledge of diabetes care is a high priority. They

The second initiative (J-DOIT) is a series of different studies, each aiming to improve the outcomes of diabetes treatment. The J-DOIT studies involve both GPs and specialists. J-DOIT 1 is concerned with primary prevention, aiming eventually to prevent 50% of type 2 diabetes incidence. It examines the progress of about 3,500 patients, comparing diabetes incidence with or without education about diet and exercise. J-DOIT 2 is studying the effect of non-treatment or non-compliance with treatment, aiming to prevent 50% of patients lapsing in their treatment. A national survey by the Ministry of Health, Labour and Welfare showed that 50% of people with diabetes were not treated. J-DOIT 2 compared the progress of diabetes in those never seen by doctors, those diagnosed but not following treatment, and those who had allowed their treatment to lapse. A pilot study will be completed in December 2007 showing that educating and reminding the patient about the importance of maintaining treatment has decreased the level of lapse by 50%. The study is now to be expanded in 2008 to cover some 12,000 patients. J-DOIT 3 aims to prevent 30% of macrovascular complications. It involves 3,000 people with diabetes in 71 hospitals.

now work to a list of 13 required indicators to be checked annually and recorded. The data from all the studies is available to hospital specialists and GPs, so that they can determine their own performance in relation to others. It is also published in journals and scientic meetings. No difculties were experienced in encouraging most GPs to take part in contributing data, although some (mainly older) doctors had some difculty with participating in the computerised system and some had concerns initially about whether their patients condentiality would be maintained.

45

Figure 17: Untreated people with diabetes in Japan

was followed by the start of government funding for J-DOIT in 2006. Government and healthcare professionals are welcoming the results, especially on the effects of patient education, and are eager for more

Discontinued treatment 1997 Treated continuously not treated

data. Figure 18: Estimated costs of treating Japans diabetes population (calculated on the basis that recommended improvements in patient education and quality of GP care are not implemented)

2002

Treated continuously

not treated

Treatment Daily diabetes care, clinic visits, drugs Dialysis

for how many people 7.4 million x 0.5 as 50% do not receive treatment 56,000 7.4 million x 0.5 7.4 million 10.8 million x 0.41 as 59% will be receiving treatment

Cost in 2002 ($)

Cost in 2010 ($)

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

$106.58 million $27.25 million $33.25 million $206.02 million (at least) $347.15 million (at least)

Source: Ministry of Health, Labour and Welfare, 1999 and 2002 It is also seen as extremely important to improve patient education, especially as so many diabetes patients in Japan (~50%) do not see doctors regularly. Even in JDDM studies which showed dramatic improvements in HbA1c levels of type 2 patients from 8.4% to 6.8% after six months controlled treatment, the results were affected by the dropout of 35% of the patients12. Despite the focus on work and achievement in Japan, many people fail to pay attention to their health. More health education is needed in schools. The government is starting a health education programme, but diabetes specialists feel that not enough investment is being made. Achievements There are indications that patient outcome is improving in response to intervention in the J-DOIT studies. The Japanese government has now recognised importance of this work, and of the data management system and database study. In early 2004 the Japanese Ministry of Health, Labour and Welfare invited the Japan Diabetes Study to strengthen its programme of diabetes education. A group of specialists presented evidence on the economic impact of diabetes to the Parliaments Health Committee later in 2004. Among the data quoted was the estimated annual cost of diabetes treatment and its projected cost in 2010. This

Hypertension treatment Total treatment 2002 Total treatment 2010

Source: Professor Masashi Kobayashi13 Exchange rate 123.29 = 1 US$ at 1.6.200214 The future It is probably too early to say if the outcome of these studies is being used to change treatment guidelines. They will be useful for new future guidelines e.g. in showing the relationship between complications endpoints and the history of treatment. The data will all be published. The results will continue to improve the performance of GPs and specialists; GPs in particular are seen as needing to see and analyse the data to improve their knowledge. The government is now likely to support future studies and is amenable to arguments on costs, both those of healthcare needed and of productivity losses.

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Sweden
Key learning Publishing data on quality indicators regarding treatment and diabetesrelated complications can encourage healthcare professionals to use their own data proactively in the treatment of patients which in turn brings more people with diabetes into good control. Outline National diabetes register initiated and run by the diabetes specialists professional association, the Swedish Society of Diabetology; dedicated to compiling annual data on glycaemia, other risk factors, process measurements and diabetes complications and to provide systemic analysis of diabetes care. Figure 19: Key indicators for Sweden
Underweight BMI <18.5 2.2 Normal BMI = 18.5 24.99 59.3 Pre-obese BMI = 25-29.99 33.8 Obese BMI >30 10.1

Background The Swedish National Diabetes Register (NDR) was started in 1996 to provide the evidence for continuous quality assessment of diabetes care. Data on 17 indicators covering health, lifestyle, biochemical measurements and complications are registered annually by physicians and nurses at hospital clinics and primary care centres. Participating units are throughout Sweden, and all county councils take part. The register covered well over 131,000 people with diabetes in 2005, including some 36,000 in 90 hospitals and 95,000 in 659 primary care centres. These represent about 40% of the total number of people with diabetes in Sweden. Initiatives The NDR has been established to compile continuous data on the practical treatment of people with diabetes which would complement any studies conducted for other purposes. As well as providing a national resource, it offers local treatment centres data on the indicators of care, enabling comparisons to be made between individual centres and with national or regional data. Local information can be used by physicians and nurses for a continuous assessment of their own centres performance, which stimulates achievement to aspire to meeting treatment targets.
People with diabetes aged 20-79, million 0.47

BMI, %

Source: WHO 20061

Diabetes prevalence

Population aged 20-79, million 6.46

Prevalence % 7.2

Professor Sofa Gudbjrnsdottir: The challenge is not so much to get the data collected, but to get the healthcare professionals to learn to look at their own data regularly, and check its quality. This is a way to drive the process. We have recorded data for ten years but just doing that does not help.

Source: IDF Diabetes Atlas 20062

HbA1c <6% 27.0 HbA1c <6% 51.3 HbA1c 6-7.5 % 42.0 HbA1c 7.5-9 % 24.0 HbA1c >9% 7.0 HbA1c >7.5 % 12.3

HbA1c, % of hospital patients with diabetes HbA1c, % of diabetes pations in primary care

The NDR is internet-based and will, in the near future, allow individual people with diabetes to follow their own progress online. The Swedish NDR has taken care since its inception to ensure validation of the data. Measurement of HbA1c has been validated by a collaboration between laboratories called Equalis, using regular calibration to the standard Swedish high-performance Mono-S method. This means that Swedish HbA1c levels are fully comparable throughout the measurements of 1996-2005; but they are about 1 unit lower than values measures according to the international DCCT standard.

HbA1c 6-7.5 % 36.4

Source: Swedish National Diabetes Register, Annual Report 20063

Note: Swedish values for HbA1c are about 1 unit lower than values measures according to the international DCCT standard (see below).

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Challenges Among the main problems experienced by the NDR was the variable support received from the county councils less than 40% of the people with diabetes were included from ten out of 21 councils. It appears that many patients registered in primary care an increasing proportion of total diabetes patients are still not registered with NDR. However participation is high from county councils with type 1 patients at hospitals. The NDR also demonstrates signicant regional differences in the achievement of treatment goals for risk factors, frequency of complications, and process measurement. It is therefore well placed to draw attention to the ideal of converging toward higher standards. However a gap may be inevitable between indicator targets and achievable levels. Achievements The Swedish NDR gives a complete account of progress in diabetes treatment which is unparalleled in the world. Its records now cover the period between 1996 and 2005 and allow extensive analysis of the improvements recorded and the level of achievement of targets. For example, people with onset age 30 years epidemiologically classied as type 2 show a steady decline in average HbA1c from 7.4% in 1996 to 6.9% in 2005, regardless of the type of treatment. The proportion of these people reducing their HbA1c increased signicantly through the ten years, although only 27% reached the target of HbA1c < 6.0% set by Swedish guidelines. Similar reductions were shown in average blood pressure levels.

Figure 20: Reduction in HbA1c and attainment of HbA1c targets, 19962005.

1996 8.0

1997

1998

1999

2001
7.8

2002

2003

2004

2005

7.4 7.4 7.2 7.3 7.2 7.1

7.4 7.3 7.2 7.1 7.1 7 7 7

6.9

6.9

7.1 7.1

7.0 6.5 6.0 5.5 5.0

All in group B

Oral agents only 1998 1999

6.5 6.4 6.3

6.7 6.8 6.7

Oral agents + insulin 2001 2002 2003

Insulin only

1996 100 80 60 40 20 0

1997

2004

2005

16 20 21 21

HbA1c <6.0%

22 23 24 25 27

53

58 59 62 63 66 65 66 69

HbA1c <7.5%

Note: Due to the way the Swedish HbA1c values is calculated, the HbA1c values

The decrease in average HbA1c between 1996-1999 in type 2 patients has been calculated to correspond to a reduction of 4% in any complication of diabetes and of 8% in microvascular complications, based on UKPDS predictions15.

in Sweden is approximately 1% point lower than in other countries

48

84 87 88 89 89 91 91 91 93

HbA1c <9.0%

6.9

7.3 7.2 7.2 7.1 7.1 7.1 7

7.5

7.5

7.6 7.6

The list of complications of diabetes recorded by the NDR has increased over the years and now includes microvascular complications like microalbuminuria and retinopathy as well as the myocardial infarction and stroke, renal disease, reduced vision and amputation included from the beginning. They are able to show, for example, the progress of retinopathy with longer duration of diabetes, and can calculate the ten-year risk of coronary heart disease and stroke in patients with no previous cardiovascular disease, through use of the large number of known indicators and the model developed by the UKPDS . An interesting result is
16

Figure 22: Mean ten-year risk for coronary heart disease, %

Patients with all levels of the risk factors Patients who had reached the goals for HbA1c, BP, total cholesterol, HDL cholesterol and non-smoking 40

30

30

the fall in the proportion of people with diabetes receiving eye examinations and foot checks during 2002-2005, at a time when the NDR was reporting on signicantly more people with diabetes who were being treated in primary care. The NDR may therefore be able to contribute far-ranging evidence on the implications of changing healthcare practices. Figure 21: Progression of retinopathy with duration of diabetes

20 18 10 7 0 3 Age <60 females Age <60 males Age >60 females Age >60 males 13 7 9 18

Group C, 2005: 10-year risk for fatal/non-fatal CHD in 2005 (according to the UKPDS risk engine).

All patients Duration 15-24 yrs 100 90 80 70 60 50 40 30 20 10 0 5 Group A: type 1 diabetes at hospitals 29 68 67 87

Duration <5 yrs Duration >=25 yrs

Duration 5-14 yrs

The NDR data enables study of how far healthcare practices recommended by guidelines are met in practice. A number of studies in other countries have shown that people with diabetes were not receiving the recommended standard of care in the USA or in the Netherlands17, 18. The NDR measures of real patient outcomes ensure that any differences between recommendations and reality can be identied. The future

87 72 50 34 26 15 Group B: Debut age >=30 years at hospitals 12 Group C: Debut age >=30 years in primary care 25 55

65

The NDR will clearly continue to be an excellent example of the value of carefully designed, validated data. It is extremely broad in its potential for analysis, and its duration will add to its usefulness as a source for improved treatment guidelines in the future.

Frequencies of retinopathy in 2005, in all patients of groups A, B and C, and by intervals of diabetes duration.

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The USA
Key learning Creating transparency facilitates competition among HMOs that can initiate the introduction of new and innovative treatment programmes. Outline The major existing national register initiated and run by an independent not-for-prot entity, the National Committee for Quality Assurance. Effective mechanism for compiling annual data on diabetes and a range of other medical conditions, drawn from data reported under standardised audited protocol by health plans serving both commercial and public sector (Medicare and Medicaid) programmes. Overall aim to improve the quality of healthcare through the systematic analysis of healthcare input and outcomes data. Figure 23: Key indicators for the USA
Underweight BMI <18.5 2.4 Normal BMI = 18.5 24.99 35.1 Pre-obese BMI = 25-29.99 34.1 Obese BMI >30 32.2

Background As one of the leading causes of death and disability, diabetes is estimated to affect some 20.8 million people of all ages in the USA, or 7% of the population, or 9.6% of the population aged over 20 (2005 data; US National Estimates19). Of these, one third are as yet undiagnosed. These average gures mask the signicant variation between diabetes prevalence in groups of different ethnic origin, e.g. non-Hispanic black people (13.3%), Hispanic / Latino Americans (estimated 9.5%), American Indians and Alaskans (12.8) and non-Hispanic white people (8.7%); all aged over 20 years. Diabetes therefore represents a very signicant healthcare demand and economic cost to the USA. In 2006, diabetes is estimated to have been the cause of 10.9 million avoidable sick days in the US workforce, costing productivity loss of $1.7 billion20. As healthcare depends on health insurance, much of which is linked to employment, as many as three million people with diabetes in the USA may have insufcient cover to provide reasonable healthcare, or none at all21.

BMI, %

People over 65 years receive health insurance cover from the national health plan, Medicare. Those with a low income and within certain eligibility criteria (i.e. not all) also obtain state-administered support for healthcare costs from Medicaid. The bulk of the working population are

Source: WHO 20061

People with diabetes aged 20-79, million 19.16

Diabetes prevalence

Population aged 20-79, million 208.67

Prevalence % 9.2

covered for healthcare costs by one of a range of some 400 commercial health plans. But still outside any of these schemes are an estimated 45 million people who have no health insurance, and this number is increasing.

Source: IDF Atlas 20062 The National Committee for Quality Assurance (NCQA)22 is a key US
HbA1c, % of people with diabetes Commercial health plans Medicare Medicaid HbA1c <7% HbA1c 7-9% HbA1c >9%

organisation, a private-sector, not-for-prot organisation, founded in 1990 with the aim of improving the quality of healthcare through collection and analysis of data. In the early 1990s, the large US companies were the major purchasers of healthcare, through the employer-based insurance system. At that time the rst health maintenance organisations (HMOs) were developing insurance bodies playing an active role in managing the care of patients. Because of this increasing inuence of insurers over actual healthcare provision, a group of employers and

41.8 45.9 30.2

28.6 26.8 21.1

29.6 27.3 48.7

Source: NCQA 2007

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highly developed health plans devised the rst stages of a measurement system called HEDIS (the health plan and employer data information set; now renamed the health effectiveness data information set). In the beginning HEDIS was limited to measuring a few areas like screening for breast and cervical cancer. Initiatives NCQA came into existence at the same time as a joint effort between some of the more advanced health plans and purchasers to accredit HMOs and to measure directly the quality of care in these plans. NCQA acquired the original HEDIS measures and set up the basis of a system to offer balanced evaluation of healthcare. Today HEDIS includes over 75 measures of medical treatment given and indicators of its effect. The nine measures relating to diabetes were developed in collaboration with the American Diabetes Association (ADA) and the Alliance for Diabetes. Figure 24: NCQA Measures for management of diabetes and its complications

The data is collected within each health plan according to strict NCQA instructions and specications and under the inspection of an auditor. The health plan supplies either a full set of data from all its members, or a random sample of 411, calculated to give an 85% probability of showing a 5% difference on a single measure. NCQA receives this data from about 600 health plans, both HMOs and increasingly PPOs (preferred provider organisations; groupings of healthcare providers with an insurer under an agreement to provide healthcare at a reduced rate). The health plans are named and ranked by their clinical performance score in published tables each year, including details of the health plan score on every measure. The same set of data measures is also part of a joint programme run by NCQA in collaboration with the American Diabetes Association; the diabetes physician recognition programme. Data is collected from a consecutive (pro- or retrospective) sample of patients with diabetes within individual physician practices. Data is extracted from the individual paper medical record. The system has now been developed to enable practices with electronic medical records to extract the data and directly transmit the data to the NCQA web-based tool. The data is entered online using a data entry system that creates a small registry for 25 patients with diabetes in each practice. This is submitted to NCQA. The web-based software scores the practice on each measure. For each measure a threshold set of performance is set, and passing the threshold wins points. If the total number of points from all the measures passes a second threshold, the practice becomes a recognised NCQA-ADA practice. This recognition is valued by physicians practices because it is published information, and qualies them for inclusion in many health plans. It also overcomes the problem of inaccuracy of most administrative (claims) data and includes patients from multiple insurers. Some plans give nancial incentives for recognition; some use the scoring to arrange their health care providers in tiers of varying co-payment. While physicians are scored on each measure, public information on their individual performance is limited to whether or not they have achieved recognition. The reason for this is the small amount and the reliability of data at that

These measures (known by some other data systems as indicators) estimate the percentage of health plan members aged 18-75 with diabetes (type 1 and type 2) who had each of the following: * HbA1c testing * poorly controlled HbA1c (greater than 9.0%) * good HbA1c control (less than 7.0) * retinal check * serum cholesterol (LDL) screening * serum cholesterol (LDL) controlled to less than 100mg/dl * medical attention for nephropathy * blood pressure control (less than 130/80 mm Hg) * blood pressure control (less than 140/90 mm Hg)

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level. But the practices themselves are informed of their individual scoring, so that they are able to assess their own performance. Challenges HMOs participating in the Medicare and Medicaid programmes are required by the federal agency that oversees those programmes, the Centers for Medicare and Medicaid Services, to report to NCQA as part of their supervision of health plans. Many large corporations and some states also require their health plans to report HEDIS measures. But NCQA estimates that more than 100 million working American people are members of health plans that have not yet committed to HEDIS or NCQA, and are not therefore providing data for publication. There is some opportunity for health plans not to report, but they risk losing government business or not working with those large companies. There is some evidence of poorer performance from those not publicly reporting. Figure 25: Effectiveness of public reporting health plans, select commercial averages, 2006

Figure 26: Trends in HbA1c testing and results, 1998-2006, all three types of health plan Proportion given HbA1c test
% 90 Medicare Commercial 80 Medicaid

70

60 1998 1999 2000 2001 2002 2003 2004 2005 2006

Proportion with poor HbA1c control (HbA1c >9%)

% 60

50

Medicaid

Publicly reporting Percentage achieving only poor diabetes control HbA1c >9%

Non-publicly reporting

Difference
40

29.4

31.9

(2.5)
30

Commercial

Source: NCQA20
20

Medicare

Achievements The level of registration of measurements with HEDIS and their publication showed signicant increase during the late 1990s; the proportion is still rising but at a slower rate.

1999

2000

2001

2002

2003

2004

2005

2006

Source: NCQA20 A number of the nine measures recorded for diabetes care are relatively newly introduced or adapted, so it is not possible to derive trends, but these offer a baseline for future measurements. Of those which have been recorded over a period of years, most continue to show improvements.

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There is evidence that the NCQA system encourages competition between the health plan organisations, and many health plans offer incentives to the physician to enter contracts with them, which reinforces the drive to report performance. NCQA is currently preparing demonstration programmes, which will include feedback from practices about how far they have been able to adopt and use clinical information systems, how this has enabled decision support and care management, and how far it has encouraged patients to participate in their own care. The future NCQA is investigating a wide range of other activities to encourage health plans to gather data. Some plans offer disease management for people with diabetes, with a case manager to advise them on self-care. The ultimate aim is to encourage practices to use information systems to improve care, in diabetes and many other areas. Many primary physicians practices are still very small, and there are still many practices which do not have information on who their patients are. The ideal would be to stimulate change in the systems used to pay practices for evaluation and management, and to use the evidence to inuence better care for patients. NCQA is working together with many other organisations including the American College of Physicians, the American Academy of Family Practice, and the American Academy of Paediatrics, and launching a major programme for improving practice systems as a tool to improving care, especially in chronic illness with diabetes as the lead, followed by cardiovascular disease, asthma and COPD.

The case from Israel depended upon the initiative of one of the leading HMOs to collect and interpret systematically data from the people with diabetes who are clients of its own primary care services. Italy, in contrast, has focused on the information that can be drawn from the specialist care centres, and here the initiative has come from the diabetes specialists professional association. Swedens national register is exemplary, covering both specialist and primary care, and with support from local and national government. Finally the USA, with its insurance-centred healthcare provision, is operating a government-backed arrangement in fairly tight cooperation with the health plan providers. Diabetes care is improving in all of these countries, to differing extents and with differing levels of evidence. These very different approaches show an important principle for the Changing Diabetes Barometer that the method of gathering and analysing data on diabetes care must be tailored to the countrys own individual characteristics, in terms of its population size, ethnic mix and state of wellbeing, its politics and economics, its level of education, and its healthcare resources of nance, skills and training. In each of the countries examined the strongest voice has taken a lead in setting up a measurement system. In India and Japan the leading academic health professionals have set out a pattern of study; Israels primary care system and Italys specialists have set the pace in their countries. Sweden has an extremely broad-founded approach involving all partners in healthcare, and the USA has built a system that works out of a very nance-oriented, government-administered social structure. Each of these systems has

4.3  Overview of case studies what do they show us?

The initiatives from different countries illustrate a broad range of approaches to, and stages of development of, registers of data on the treatment of diabetes. India and Japan have approached the question through developing academic studies of the effects of different treatment regimes in large population samples; giving rise to important information resources.

evolved out of the available strengths and constraints of the country. All of the systems offer opportunity for data analysis for the benet of future medical practices. The systems of Sweden, Israel, Italy and the USA enable, to varying extents, individual specialist clinics or primary care practices to see how their performance compares with others, so they can improve it. None of them yet gives full and open access to each unit of data indeed most of them report at least some reluctance from the medical profession to contribute their data, at least initially. In that respect the USA healthcare providers may have come furthest, in a system which offers

53

both nancial incentives to contribute and disincentives for refusing, in the form of non-listing by health plans which are effectively their customers. Government support for the various data registries at the national, regional and local level is vital and in most cases slow in coming. Financial limitations are probably the root of reluctance in at least some cases, e.g. India, where government interest and awareness is high, but resources limited. Tradition, inertia and fear of criticism from the medical establishment have not helped the development of data systems in several of the countries studied, but even in these, support from governments is now increasing as the evidence which has been assembled starts to tell its own story in terms of potential improvements in patient outcomes. In summary: initiatives to compile data registries and use the data analysis to improve diabetes care has been shown in many varied healthcare systems to be valid in both economic terms and in improving patients wellbeing and quality of life. Further efforts to do this can learn a great deal from the existing experiences; to build from the strongest possible starting point; to take full account of the characteristics of the country, its people and existing systems; and to work towards achieving full government support, in principle and in resources.

Two recent initiatives of Novo Nordisk in different parts of the world are examples of how changing one aspect of diabetes care can lead to a better outcome, and may be a source of ideas for improving practices in other regions.

India
Although Indias economy is growing very fast (the second fastest in the world), it suffers a high level of poverty. The number of people with diabetes (40.9 million) is growing dramatically and is expected to reach 74 million by 2025. The general socioeconomic conditions and a general lack of awareness of diabetes lead to late diagnosis, delayed treatment and an unnecessarily high incidence of complications. Even where it has been diagnosed, it is often accompanied by lack of interest in seeking or following treatment, because of the lack of visible symptoms. Routine testing for HbA1c has not been fully integrated into the routine management of diabetes. Also unless they are below the poverty level, people with diabetes in India have to pay for their treatment out of their own pockets; few have private medical insurance.

4.4 Novo Nordisk initiatives to improve control

The Changing Diabetes Barometer and the case studies earlier in this chapter illustrate the efforts and initiatives in many countries to improve the availa bility and effectiveness of diabetes care. The aim of them all must ultimately be to improve results for patients, although to do that, the present efforts must rst be measured. Professor Elizabeth Teisberg: If you want to improve results for patients, you have to measure results. We all know the adage: What you measure will improve. You have to focus attention on improving quality because good health is inherently less expensive than disease progression. The Improve Control programme was launched on World Diabetes Day, 2006, to raise awareness of diabetes in Indias major cities, bringing diabetes to the attention of some 40 million people.

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The Novo Nordisk TEAMS programme (Tailored Education And Marketing in Sweden) offers extra training for GPs and nurses over a 3-6 month period on how to diagnose and treat diabetes. The programme has the specic objective of raising the standard of diabetes treatment standard, including concrete HbA1c targets. Some GP clinics taking part in the TEAMS programme have been able to show 0.6% reduction in HbA1c during 2006, which compares with an average reduction of 0.1% shown in the National Diabetes Register over the same period. GPs are demonstrably now more familiar with assessing and treating diabetes. The programme has encouraged the transition to insulin treatment for 17% more patients than the previous conversion rate. Part of the initiative was to offer HbA1c screening in four major Indian cities in the rst phase over 3,000 patients were screened, of whom almost half had signs of diabetes related complications, and a third had HbA1c over 9%. Over 800 people were offered insulin treatment, and those who accepted treatment over the following six months showed an average reduction in HbA1c of 1.64% - an extremely signicant reduction in such a short time. Summary: screening for diabetes followed by appropriate treatment in countries where expected prevalence is high, because of factors which may include enhanced genetic susceptibility, lifestyle or health awareness, can yield dramatically improved outcomes. Measuring and improving diabetes care in the developing countries presents very great problems; discussed in Chapter 2. Substantial efforts have, however, been made by many players in recent years to address the worldwide diabetes pandemic. Prominent among these have been the WHO and related organisations, the International Diabetes Summary: even where effective diabetes care is already in place, the increasing burden on the healthcare system through the rising incidence of diabetes requires further training of the healthcare professional workforce.

4.5 I mproving diabetes care in developing countries

Sweden
Sweden has an enviable position as one of Europes leading countries in diabetes treatment. Government-supported healthcare is available to all Swedish citizens. However increasing diagnosis of diabetes brings increased demands on primary care physicians, who must treat more new patients and also take on more of the care which was formerly in the hands of specialists.

Federation, the World Diabetes Foundation and leading healthcare professionals in different countries. The initiative for these developments has come largely from the international healthcare organisations and industry; while governments and their health departments are only recently involving themselves as evidence starts to become available. This situation applies in Africa, and also in Central and Latin America and South-East Asia.

55

Africa
Most countries in Africa do not have a national diabetes programme, and little education is available for people with diabetes or healthcare providers. Signicant numbers of people lack adequate care. Even ve years ago, little epidemiological information was available about the prevalence of diabetes in African countries. It is estimated that African countries use less than 10% of their public health budgets on preventing and treating non-communicable diseases, due to a focus on the infectious diseases like HIV/AIDS, malaria and tuderculosis23. The number of people with diabetes in Africa in 2006 (estimated by the IDF in the region of 10 million) is expected to double by 2025. One of the most signicant initiatives to improve diabetes care has been the 2006 Diabetes Declaration and Strategy for Africa; developed by the IDF Africa Region, WHOAFRO and the African Union, with support from Novo Nordisk. This builds on three previous diabetes declarations the 1986 St Vincent Declaration, the 1996 Declaration of the Americas, and the 2000 Western Pacic Declaration .
24

pion for diabetes or chronic diseases in general, and development and implementation of guidelines for treatment of type 2 diabetes and for education for healthcare professionals and patients. Many countries are now developing projects to establish a national diabetes strategy and improve access to insulin and other diabetes treatments. A core group of ten countries is leading these efforts; including Cameroon, Tanzania, Kenya and the Congo. The group is developing a baseline for measurement of diabetes care over the coming ve years, starting in early 2008. This will include appraisal of the strategies in place, which sector is initiating action and what training is available for healthcare professionals. It will also set up a study of diabetes outcomes, including HbA1c and the less severe complications. The group anticipates a massive increase in diabetes prevalence: previous studies showed that 80% of people with diabetes were unaware of it.

Central and South America

A number of initiatives to measure and record the quality of diabetes

The Diabetes Declaration and Diabetes Strategy for Africa cover subSaharan African countries, (North Africa is taken by the IDF into the Middle East region). Their recommendations are addressed to governments of African countries, and all partners and stakeholders in diabetes, to prevent diabetes and related non-communicable diseases, and to improve quality of life and reduce morbidity and premature mortality from diabetes. This will require provision of adequate, appropriate and affordable medications and supplies for people with diabetes; earlier detection and optimal quality care of diabetes; and the dissemination of information and education in order to improve self care. The strategy also calls for actions to prevent diabetes, for example by creating healthier environments and ensuring equitable access to care for people at risk of diabetes. The Diabetes Declaration and Strategy for Africa has been the basis of new actions in many African countries, including WHO epidemiological surveys, the appointment of government health department cham-

care in Central and South America arose from the Declaration of the Americas on Diabetes (DOTA)25. The declaration has been implemented since 1997 by a group representing the founding organisations for the North American and South and Central American regions of the IDF, PAHO and industry partners including Novo Nordisk. DOTA focused on improving the quality of care, diabetes education, national programme development and public awareness. Most relevant to the objectives of the Changing Diabetes Barometer is the DOTA multinational project to evaluate quality of diabetes care: Qualidiab. In 2002, it used questionnaires compiled with the help of trained nurses to gather information from 13,513 people with diabetes in six countries: Argentina, Brazil, Colombia, Chile, Paraguay and Venezuela. The questionnaires were designed to reveal the availability of key services and tests as well as the patients outcomes. A workshop to examine its ndings26 reported 57% of those with type 2 diabetes had HbA1c over 7.7%, and 60% were found to have blood pres-

56

sure higher than 140/90 mm Hg; leading to the overall conclusion that diabetes care needs to be strengthened. The main barriers raised to proposed quality improvement were reluctance to change, government disinterest, inadequate staff numbers and inadequate training; also condentiality and handling of data. A later workshop showed that more than half of people with diabetes in the Caribbean (Bahamas, Jamaica and Saint Lucia) had HbA1c over 8%. However some queries were raised over methodological aspects of Qualidiab, such as the selection of centres, patient sampling procedures and denitions of the measured events27. During the past few years DOTA has also facilitated other initiatives in the region, including strategic planning workshops for non-governmental organisations (NGOs) in Barbados, Panama, and Bolivia towards development of national diabetes programmes; also the Qualidiab project in Latin America; and diabetes education. PAHO has adapted methodology originating from WHO, and produced the pan-American STEPS questionnaire28 to collect information in a standardised form from diabetes patients about their care. The information can then be used for making comparisons between countries and for monitoring trends within countries. The approach encourages the collection of small amounts of useful information on a regular and continuing basis. The methodology includes the questionnaire itself, a manual, and software support for data entry, data processing, and reporting.

Summary
The initiatives examined from developing countries all represent progress towards better care of people with diabetes. However their variability in approach and in detail reinforce the message of the Changing Diabetes Barometer: that it is necessary to measure what is done in order to improve it.

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5. direct costs of diabetes

5.1 Controlling diabetes, controlling costs
As described in this report diabetes is very much a long-term condition. Type 2 diabetes in particular can take years to develop before it is diagnosed, and then the person diagnosed can live without clear symptoms for more years, treated only by lifestyle changes, before drug treatment or other medical intervention is needed. Many people in the early stages of type 2 diabetes do not take the trouble to change their diet and exercise habits, because they do not feel ill. In recent years much evidence has been compiled to show that more effective treatment improves the long-term prospects of the person with diabetes, as it can delay the onset of complications. More effective treatment at an earlier stage will marginally increase the early costs, but will reduce costs in the longer term by delaying or preventing the hospital treatment needed for a wide range of complications. Such a course of action can release nancial resources to be used in other aspects of healthcare. But can we quantify these ideas? How much would it affect a person with diabetes to be treated in such a way that blood glucose is controlled more or less strictly? Would that really make a difference to healthcare costs? These are not just hypothetical questions: it has now been shown that in the UK, after less than 10 years, the extra investment needed to nance enhanced treatment (where the HbA1c level of all people newly diagnosed is brought to 7%) would reduce because of the savings on treatment of complications. It would then become less expensive to support than the previous, non-enhanced treatment, because that would have continued to allow earlier development of costly complications. Computer simulation models can throw light on this extremely complex situation with so many variables, allowing greater understanding of how best to inuence treatment decisions. A new simulation takes as its starting point the widely cited UKPDS (UK Prospective Diabetes Study), which showed that there was a signicant relationship between the control of blood glucose and the development of diabetes-related complications .
1,2

hanced level of blood glucose control. It opens the possibilities for decisionmaking on the best, or most cost-effective course of treatment for national populations with diabetes, that are becoming increasingly well dened.

5.2 Studying diabetes in the UK

The UKPDS showed that if blood glucose control was increased, each 1% reduction of HbA1c corresponded to a 14% reduction in any diabetesrelated complication, and a 37% decrease in microvascular complications (e.g. retinal, renal or nerve damage). But while, based on the extensive evidence of this and other studies, good glycaemic control has emerged as a key component of diabetes care, many people with diabetes fail to achieve the HbA1c target of 6.5% 7.5%, recommended by the National Institute for Health and Clinical Excellence (NICE)3. A study of 6,192 type 2 diabetes patients cared for in the UK in 2002 reported that 76% of patients had an HbA1c > 7.0% and 69% had HbA1c > 7.5%5. The Scottish diabetes survey of 2004 reported that 49.8% of patients had an Hba1c level 7.5%6.

people who develop the complications of diabetes incur far greater healthcare costs
People who develop the complications of diabetes incur far greater healthcare costs than those without complications. Compared to patients without complications, hospital costs for those with microvascular complications were doubled, those with macrovascular complications tripled and those with both micro- and macrovascular 5.5 times as great7,8, In the T2ARDIS study of UK patients8,9, again taking the costs of patients with no complications as the baseline, patients with microvascular complications increased hospital inpatient costs 2.5 times, those with only macrovascular complications increased costs 2.7 times, and those with both sets of complications increased hospital costs 5.5 times. Similar outcomes were reported for the other CODE-2 European countries10, and also in US studies11,12, where diabetes-related costs for patients with an HbA1c >7% were 20 32% higher than for those with HbA1c at target 7%.

The analysis explores what would be the medical and nancial implications if UK people with diabetes were changed today to an en-

58

As several of the complications associated with diabetes are very costly, e.g. end-stage renal disease, of which diabetes is the largest cause, people suffering them make a disproportionate contribution to the total cost of UK diabetes care. But the potential cost savings to the NHS of treating patients to the recommended HbA1c target have not been evaluated. This chapter explains the ndings of a computer simulation model, using UK data and undertaken on behalf of Novo Nordisk by IMS, using the CORE Diabetes Model (CDM)13,14. The CORE Diabetes Model (CDM)15 is an extensively validated health economics model developed to predict outcomes in patients with type 1 or type 2 diabetes. It involves 15 inter-related sub-models that run in parallel, to simulate the potential complications of diabetes. It can be primed with patient cohorts, and can be dened in terms of age, gender, baseline risk factors and pre-existing complications. Disease management and economic settings can be altered to reect country-specic patterns of care. In this way the CORE Diabetes Model allows comparison of different patient populations in a variety of realistic clinical settings, to yield long-term health and economic outcomes. The likelihood of transition between stages and/or complications is based on the probabilities and risk equations taken from published literature including UKPDS, WESDR and Framingham studies15.

The baseline taken for comparison was the outcome represented by the newly-diagnosed UK diabetes population, with the present HbA1c level maintained in the future. The baseline simulation assumes that the present UK people with diabetes maintain their HbA1c level at the present level, as observed in the UK Prospective Diabetes Study (UKPDS) throughout the 35 years span of the simulation. The baseline simulation can then be interpreted as the expected outcome if nothing is done to the treatment regimen.

Baseline
The simulations were performed in a theoretical population consisting of patients from the UK Prospective Diabetes Study (UKPDS), diagnosed at 52 years. The baseline is a simulation of lifetime events if HbA1c is maintained at the present level of 9.1% throughout the 35 year simulation horizon. The diabetes population examined in the simulations was chosen to be representative of the UK newly-diagnosed diabetes population. These people have fewer diabetes-related complications than those with established diabetes, so they have potentially more to gain from interventions that delay or prevent the development of future complications. Newly-diagnosed patients included in the UKPDS had a mean age of 52

5.3 Overview of the analysis

The analysis compared two alternative treatment scenarios with a baseline14. In the rst scenario (enhanced treatment), the model examined the human and economic costs if the HbA1c level of all people newly diagnosed with diabetes was brought to 7%. In the second scenario (earlier diagnosis + enhanced treatment), the assumption was made that no complications were already in existence at the time of diagnosis, and again the HbA1c level of all people newly diagnosed with diabetes was brought to 7%.

years, HbA1c of 9.1% and very few diabetes-related complications16. Very few studies of newly-diagnosed type 2 diabetes patients that might be considered representative of UK patients have been published since the UKPDS. More recent regional studies including the Poole Diabetes Study and a study comparing European and Asian patients have reported similar ages and HbA1c levels at diagnosis, suggesting that this has not changed greatly since the UKPDS17.

59

However, recent changes to the UK healthcare structure including the Quality and Outcomes Framework (QOF), the National Diabetes Audit (NDA) and the launch of structured diabetes education programmes such as DESMOND and DAFNE are expected to lead, respectively, to earlier diagnosis and improved glycaemic control. Earlier diagnosis (reducing from 52 years in 1988 to 46 years in 2000) is also in evidence in the USA18. The data did not dene whether this represented earlier diagnosis or earlier onset of diabetes, but the nding did coincide with efforts to increase patient and physician awareness and with changes in diagnostic criteria. Source: IMS14
Baseline Complication Severe vision loss 20% Congestive heart failure 41%

Major complications Acute Myocardial Infarction (AMI) 43% Amputations End stage renal disease 15%

11%

Scenario 1: Enhanced treatment

Baseline: Life expectancy and development of complications The 2002 NICE guideline on HbA1c=7% is applied. NICE is responsible for producing clinical guidelines for medical practice, and has 14 current guidelines for the treatment of diabetes. The 2002 guideline3 recommends
Age at diagnosis First minor complications First major complications

an HbA1c target of between 6.5% 7.5% for people with type 2 diabetes. (This is now under review, and the proposed guideline4 suggests that patients are encouraged to maintain HbA1c below 6.5%, unless the resulting side effects or the efforts needed to achieve this impair their quality of life). Scenario 1: Life expectancy and development of complications for base-

Baseline (HbA1c = 9.1 %)

52

60-62

66-68

68

Source: IMS

14

line and enhanced treatment

Key outcome: If no minor complications are present at age 52, the average person with diabetes can expect to develop minor complications after 8-10 years. After 14-16 years the rst major complications are expected. Figure 27 Baseline: Probability of developing complications over lifetime, %.
Minor complications Complication Background retinopathy 42% Neuropathy Microalbuminuria
Age at diagnosis Baseline (HbA1c = 9.1 %)
52

First minor complications

60-62

First major complications

66-68 68

Enhanced 52 treatment (HbA1c = 7.0 %)

62-64

68-70

70

Source: IMS14 Key outcome: With enhanced treatment, both minor and major complications are postponed 2-4 years compared to baseline and life expectancy is extended by 2 years, with strong effects on life quality.

Baseline

70%

50%

60

Figure 28: Scenario 1: Baseline and enhanced treatment: Probability and relative risk of developing complications over lifetime, %
Minor complications Complication Background retinopathy 42% 27% Neuropathy Microalbuminuria

This pattern was expected. Cardiovascular complications are inuenced by many other risk factors as well as glycaemic control and as no changes of the rate of hypertension etc. were made in the simulations, the effect of enhanced blood glucose control treatment on cardiovascular complications is not as marked as on the complications more directly linked to diabetes. These ndings are in line with the UKPDS observation that glycaemic control has a greater impact on microvascular than
70% 53% 50% 32%

Baseline Enhanced treatment Enhanced treatment vs baseline: reduction in risk of complications

on macrovascular events.

Scenario 2: Earlier diagnosis and enhanced treatment

37% 24% 37%

In this simulation it is assumed that people have no complications at diagnosis, as if they were identied and diagnosed in a screening proMajor complications

gramme rather than because of their symptoms. They are also assumed
End stage renal disease 15% 6%

Complication

Severe vision loss 20% 13%

Congestive heart failure 41% 33%

Acute Myocardial Infarction (AMI) 43% 33%

Amputations

to have enhanced treatment, to HbA1c target of 7%. Scenarios 1 and 2: Life expectancy and development of complications

Baseline Enhanced treatment Enhanced treatment vs baseline: reduction in risk of complications

11% 9%

for baseline, enhanced treatment and earlier diagnosis + enhanced treatment

37%

21%

24%

18%

60%
Age at diagnosis Baseline (HbA1c = 9.1 %)
52 60-62

First minor complications

66-68 68

First major complications

Source: IMS14
Note: The probabilities are based on cumulated incidence over lifetime. As time at risk is 12.5% higher with enhanced treatment compared to the baseline, due to the higher life expectancy, the cumulated incidence has been standardised to make comparison possible.

Enhanced 52 treatment (HbA1c = 7.0 %) 52 Earlier diagnosis + enhanced treatment

62-64

68-70

70

65-68

69-71

71

The risk of developing minor complications with the enhanced treatment is reduced by 25 40%, but the effects of enhanced treatment on major complications are more diverse. The risk of developing severe vision loss or end stage renal disease is reduced by up to 60%, while the risk of cardiovascular complications and amputations is reduced by 20 25%.

Source: IMS14

61

longer, better quality life

Key outcomes: Earlier diagnosis (i.e. earlier in the course of the diabetes, before any complications have begun to develop) and enhanced treatment postpone minor complications by up to 5 years compared to the baseline. Earlier diagnosis and treatment to target postpones major complications by 3 to 5 years compared with the baseline scenario, and extends life expectancy from diagnosis by 3 years (18.75%). Postponement of minor and major complications, and also extended life expectancy have great effects on life quality.

Enhanced treatment causes a large reduction in probability of minor complications. Little further difference is made with early diagnosis; their development is postponed but not avoided. The maintenance of HbA1c in both enhanced treatment scenarios (with and without early diagnosis) is the reason there is no real difference in incidence of complications between the two.

major complications reduced by up to 70%

Early diagnosis makes a very substantial reduction in the risk of severe vision loss (56% less risk) and end stage renal disease (70% less risk). The reduction in risk of cardiovascular complications and amputations is more than 25% compared to the baseline.

Figure 29: Scenarios 1 and 2: Baseline, enhanced treatment, and earlier diagnosis + enhanced treatment: Probability and relative risk of developing complications over lifetime, %
Minor complications Complication Background retinopathy 42% 27% Neuropathy Micro albuminuria 50% 32% Severe vision loss 20% 13% Congestive heart failure 41% 33% Major complications Acute Myocardial Infarction (AMI) Amputations End stage renal disease

Baseline Enhanced treatment Earlier diagnosis + enhanced treatment Enhanced treatment vs. baseline risk reduction Earlier diagnosis + enhanced treatment vs. baseline risk reduction

70% 53%

43% 33%

11% 9%

15% 6%

27%

53%

31%

9%

30%

31%

8%

5%

37%

24%

37%

37%

21%

24%

18%

60%

37%

24%

38%

56%

28%

28%

27%

70%

Source: IMS14

Note: The probabilities are based on cumulated incidence over lifetime. As time at risk is 18.75% higher with enhanced treatment compared to the baseline, due to the higher life expectancy, the cumulated incidence has been standardised to make comparison possible.

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5.4 Economic costs of diabetes

The CORE model can be used to provide an estimate of the direct economic costs of diabetes. The direct healthcare cost categories in the CORE model are: costs of treating complications, containing cost estimates for 20 medical events and follow-up costs after events have occurred management costs treatment with medical drugs to prevent cardiovascular disease, screening for nephropathy, eye screenings, ulcer treatments and foot care treatment costs based on the UKPDS intensive treatment arm for those patients treated to an HbA1c target of 7.0%. UKPDS conventional treatment costs were assumed for those patients receiving usual care. This was considered appropriate because the UKPDS costs were based on patients treated in the UK and were specic for type 2 diabetes.

Figure 30: Treatment costs derived from UKPDS

Cost of treatment (2006 )

Treat to target
Anti-diabetic medication Implementation (nursing and other HCPs) 105.44

Usual care
64.07

226.54

69.81

Total annual cost Source: IMS13

331.99

133.88

The costs of the three treatment scenarios in the analysis differ substantially over the simulation period; not only in total but in their distribution between complication costs, management costs, costs for treatment with antidiabetic drugs. Figure 31: Lifetime cumulated healthcare costs for

In each case the cost of anti-diabetic medication and the cost of UK standard physician and nurse consultations were included. The cost of anti-diabetic medication for either intensive treatment (treat to target) or conventional treatment (usual care to maintain baseline Hba1c) was based on an average of insulin/sulphonylurea costs and metformin costs reported for the corresponding treatment arms of the UKPDS. However these costs may be a conservative estimate as they do not include the more expensive treatments such as TZDs and modern insulins increasingly used in current practice. Based on current prices, the monthly cost of treatment with a daily dose of 1500mg metformin is approximately 4.80, and of 10mg glibenclamide is 2.88, while the cost of insulin is higher . As about 75% of
19

three treatment scenarios, %

100
100 87 79

85

50

70

66

11 9 13 6

13 14 5

3 3

UK type 2 diabetes patients are treated with oral agents (including 15% with orals plus insulin) the annual cost of antidiabetic agents is assumed in the current analysis at 64 for usual care, and 105 for treatment to target. For the current analysis these costs were inated to 2006 values using the health specic consumer price index. Source: IMS14

Baseline (HbA1c = 9.1)

Enhanced treatment (HbA1c = 7.0)

Earlier detection & enhanced treatment

Complication costs Management of diabetes Implementation of Anti-diabetic medication Anti-diabetic medication (OAD and insulin)

63

Note: Treatment costs include both implementation (nursing and other healthcare professionals) and the costs of antidiabetic medicines. Note: Earlier detection and enhanced treatment modelling does not include cost for early detection, these costs are not yet estimated. Early detection could be the result of general health checks for chronic diseases in general practice and therefore it would be difcult to distribute costs, or early detection could be achieved through self-testing in the future.

The extra spending on enhanced treatment, especially just after diagnosis (at age 52) is an investment in enhancing life quality and lowering treatment costs in the longer term. Over the expected lifetime of the population, being diagnosed at age 52 with diabetes, enhanced treatment and early diagnosis is a very competitive investment for both people with diabetes and for society.

In the diagram of cumulated healthcare costs over the simulated lifetime, the two treatment scenarios are compared to the baseline, which is set to index 100.

5.5 Breaking even and moving into credit

Healthcare spending on diabetes care can only be truly simulated using open cohorts taking into account the new generations of newlydiagnosed people entering the existing population with diabetes. The simulation is started with the present population with diabetes and then cohorts of newly-diagnosed people with diabetes are added. The aim is to nd out when the savings on the treatment of fewer complications counterbalance the effect of extra spending on treatment, and becomes the dominating factor which leads to lower lifetime spending in the enhanced treatment scenario. This open cohort simulation uses the following data: prevalence of diabetes (type 1 and type 2) in 2006 was approximately 3.54% for the UK according to Diabetes UK20 incidence and prevalence data specific for type 2 diabetes, from the Diabetes Audit and Research in Tayside, Scotland, relating to a 12year period between 1993 and 200421. As the Scottish study was specic for type 2 diabetes, based on a relatively stable UK population and provided detailed observed prevalence and incidence data the current analysis was based on that long-term study. The incidence rates for the simulation were calculated from the Scottish data: prevalence of type 2 diabetes: 3.13% and incidence 0.375% in 2004; with an annual 6.3% rise in incidence over 12 years and an assumed linear relationship. Under the enhanced treatment scenario it is assumed that present and newly-diagnosed people are treated to target from the time of diagnosis to the end of the simulation.

total costs can be reduced by up to 21%

Key outcomes: The enhanced treatment scenario reduces lifetime healthcare costs by 13%, and earlier diagnosis + enhanced treatment reduces them by 21%. Because of the reduction in the proportion of total healthcare spending which has to be spent on treating complications: - 85% for the baseline - 61% for enhanced treatment - 52% for earlier diagnosis + enhanced treatment, an increasing proportion of the available funds: - 15% of spending with baseline treatment - 39% with enhanced treatment, and - 48% with earlier diagnosis + enhanced treatment can be spent on treating diabetes (and maintaining and improving the patients quality of life). In the two enhanced treatment scenarios, 6% of total cost is spent on anti-diabetic medicines, compared to 3% in the baseline treatment. But the baseline treatment is that of the UKPDS, which does not take account of the more effective antidiabetic medicines developed since it was carried out. The UKPDS quoted 3% of the costs being due to antidiabetic drugs; rather lower than the 7% quoted by CODE-2, which was a later study that included more modern drugs. Also the total spending in the two enhanced treatment scenarios is signicantly less than that of the baseline.

64

 early investment in enhanced treatment sees return within less than 10 years
Key outcome:  Enhanced control of HbA1c in the short term will initially incur higher cost than that for the baseline. But within less than 10 years from the start of the new treatment regime, healthcare costs in the enhanced treatment scenario will fall below that of the baseline treatment.  The long term cost level with enhanced treatment is 85% of the baseline treatment scenario Figure 32: Total annual direct healthcare cost of diabetes in baseline and enhanced treatment scenario over time, in index (rst year annual spending in baseline scenario = 100)

From the onset of the enhanced regime, almost all people with diabetes will have experienced irreversible complications the cause of the main component of healthcare spending on diabetes. The costs of treating the complications in the existing population with diabetes are therefore unchanged in the early years of the simulation. As the cost of enhanced treatment is added to the unchanged cost of treating the complications, the annual health care cost in enhanced treatment is higher than the baseline. But the newly-diagnosed patients have fewer complications at diagnosis compared to the existing population with diabetes. As a consequence of the improved treatment regime, they develop fewer complications over time, and the economic effect of the improved scenario starts to appear. The full effect on healthcare costs is seen when the total population with diabetes has been replaced by persons that have been diagnosed under the enhanced treatment regime.

200 178

The dynamics of the economic costs of diabetes parallel the dynamics

150 6,150m 116 4,000m 100 100 103 151

of nancial investments. There is a point of break even, where the invested capital equals the earnings, and where the plan then yields a nancial surplus. In the case of diabetes, an investment needs to be made in treatment, in order to earn the reward of lower healthcare costs caused by treating diabetes complications. As the disease evolves over time, the benets from the investment are seen after less than 10 years. Compared to a nancial investment plan, this is fast.

50

0 First year after change

Baseline treatment

3,450m

3,550m

10th year after change

3,800m

20th year after change

Enhanced treatment

Note: The gure shows the development of direct healthcare cost for diabetes in the baseline and enhanced treatment scenario. With baseline treatment direct healthcare spending will see a 78% increase. With enhanced treatment the annual direct healthcare cost that can be expected in 20 years will see an increase of 51% over the present costs.

Source: IMS14

5,200m

110

65

5.6 Conclusion
This analysis shows that enhanced treatment leads to avoidance or delay of the complications of diabetes. This signicantly reduces the impact diabetes can have on patients quality of life and ability to function fully with resultant savings to the economy because of reduced loss of productivity. Earlier diagnosis, as can be achieved by screening people who may be at risk even before they are aware of possible symptoms of diabetes, leads to better patient experience because it can contribute to postponing the onset of diabetes complications. People with diabetes are able to benet from a longer period of relative health and higher quality of life, and cost savings to the healthcare system can be diverted to other needs. Healthcare resources can be spent on treating diabetes, on treating its complications, or on any combination between the two (this analysis was not able to examine the implications of diabetes prevention). Out of the balance between treatment of diabetes, or treatment of its complications, improving the effectiveness of diabetes care is the far more cost-effective choice. Where the benets of healthcare spending include reduced long-term complications, and where those benets exceed the cost, that spending is better described as investment. The long term is not far away in less than 10 years the annual health care spending for enhanced diabetes treatment will be less than the spending needed to continue at the previous, sub-optimal level of care. These considerations complement the increasing resources of know ledge on the present state of diabetes care which are the focus of the Changing Diabetes Barometer. Their ndings should together help healthcare policymakers and providers to close gaps and raise the overall level of care.

66

67

6. indirect costs of diabetes

6.1 What are the indirect costs?
Evidence-based computer modelling, as discussed in Chapter 5, has enabled a better understanding of the direct costs of caring for people with diabetes. But growing evidence suggests that the indirect economic effects of diabetes-related illness and mortality could be even greater than the very signicant healthcare costs. Although a detailed analysis of this evidence is not yet possible, it is important to note this further dimension of diabetes and its effects at this stage, and the Changing Diabetes Barometer Reports intend to return to this issue in the future. Indirect costs associated with lost productivity are multiple and potentially very large. Given the scale of increase of the diabetes pandemic, and the fact that type 2 diabetes affects people still well within their expected working life, costs relating to productivity (reduced capacity of individuals to work, reduction in overall work force, increased depenFigure 33: Multiple components of indirect costs of diabetes dency rates, GDP growth, tax collection etc.) have knock-on effects Diabetes gives rise to costs affecting the person with diabetes, to their family, employer and any other sources of care or support services. Estimates of these indirect costs must take account of lost earnings and costs due to premature mortality and disability attributed to diabetes. The development of long term indirect costs can be seen in parallel to development of long term direct costs they grow gradually as the disease progresses.

Labour market sub-optimal performance from PwD time off work early retirement early death replacement cost cost of medical insurance / healtcare plan

Person with diabetes (PwD) loss of earnings early retirement reduced pension rights medical expenses Public sector social carers cost of providing care

PwDs family costs of providing care (e.g. transport) loss of earnings loss of job security additional burden on other family members in view of lost earnings

68

within national economies. The largest part of this cost is because people are lost from the labour market while still of working age, due to chronic disability or premature death. The main costs to the employer are those of healthcare plans and/or provision of national insurance, (which are acute in systems like the USA) and the costs of replacing employees lost to illness. It is in this sector that the bulk of indirect costs associated with diabetes are felt.

The other component to the package of indirect costs is the provision of paid carers, where available, by state social security systems or through insurance schemes. Estimates of these services add signicantly to the total cost of diabetes, especially for developed countries. These costs are typically hidden, in the sense that they are not understood as a cost of diabetes but as social costs of care for disabled people. Traditionally the indirect costs were considered less important as dia-

Over a period of years, the person with diabetes may have reduced ability to take advantage of education opportunities, is likely to need more time off work through illness and may be forced to take premature retirement. This will involve loss of earnings, and possible loss of pension entitlement as many pension schemes are disproportionately based on the expected last few years of work. The person with diabetes will also be faced with out-of-pocket medical costs, which may be extensive depending on where they live. These will be much more substantial in countries without state health insurance schemes, where much of the population is unable to afford private insurance. In many developing countries, as has been seen in earlier chapters, people with diabetes and their families bear almost the entire cost of medical care, including medicines. In India, the poorest people with diabetes spend an average of 25% of their income on private care and medication1. The families of people diagnosed with diabetes also suffer nancially; again more so in the developing countries. The burden is not only in terms of incidental costs, but can be far greater if a family member is forced to give up their own work to care for the person with diabetes. This will involve loss of earnings or education opportunities, loss of job security, and further difculties for other family members. There are many examples in developing countries of carers giving up work to care for someone in the family, leading to children having to leave school to take care of younger children; with attendant effects on their future earning ability. This is a particular problem in developing countries but is also seen in developed countries among less afuent groups.

betes was a disease that hit people in the end of their life, often after retirement. This is no longer the case and there are signs that the age of onset of diabetes is still is falling and that the indirect cost of diabetes will be even more important and increase substantially in the future. Improving the effectiveness of diabetes care enables people with diabetes to go on living independent, productive lives for longer. It reduces the productivity loss suffered in the labour market and the need for support (and its costs) from families and from social care.

6.2 The Danish example

Studies of diabetes costs in Denmark in 20012,3 provide one example of the scale of indirect compared to direct costs of healthcare. The studies (based on 17,000 patients) estimate the total costs of diabetes in Denmark given the current level of medical treatment and care and how these costs would be changed under enhanced or ideal treatment (the hypothetical situation involving no diabetes related complications or mortality). While medical costs would be higher under the enhanced treatment, hospitalisation costs would be lower. However, the more striking change is in the overall reduced costs to society. Improved diabetes care could be achieved at just over half the total current costs, leading to a gain of almost 40% in productivity. The reduced costs under the improved treatment regime result mainly from reduced nursing because of the incidence of less diabetes complications.

69

Extending these ideas to the hypothetical ideal scenario, if the cost of treating diabetes complications could be eliminated, healthcare costs would be reduced by up to 50%.

Figure 35: Components of the costs of diabetes, Denmark 2001

Distribution of total costs in the current scenario Denmark 2001 An additional 16,000 people would have been alive in 2001 if enhanced treatment had been provided. Even more striking, they would have been in a good shape and productive. If diabetes did not incur any form of excess mortality and morbidity, as in the ideal scenario, an additional 36,000 would have been alive. In 2001, an estimated one third of the diabetes population, or about 50,000 people, had complications. Enhanced treatment could have reduced that number to 20,000 people. The gain in productivity, and the reduction in indirect costs, and even more importantly the resulting quality of life improvement is a direct effect of this potential fall in the rate of diabetes complications. Figure 34: Diabetes costs in Denmark, 2001, US$ million
Current treatment Total costs Healthcare Non-healthcare (social services, equipment) Patients and informal carers Production value (reduced loss in productivity) Number of people alive in the scenario in 2001 1,550 315 1,164 71 1,490 152800 Improved treatment 884 316 495 74 2,055 168800 Ideal treatment 176 157 0 19 2,576 189000

(Denmark 2001, total costs 1.6 billion US dollars)

Patient and informal caregivers time (4%) Non-health care costs (76%) Health care costs (20%)

Distribution of total costs in the improved scenario Denmark 2001 (Denmark 2001, total costs 0,9 billion US dollars)

Patient and informal caregivers time (8%) Non-health care costs (56%) Health care costs (36%)

Source: Novo Nordisk2

Source: Novo Nordisk2

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6.3 Current study in Sweden

A study of young adults aged 15-34 underway in Sweden suggests signicant long-term consequences caused by diabetes, on education, participation in the labour market, income and need for healthcare. The study analyses annual data for the period 1990-2005 for the 9,298 people with diabetes and 37,192 people matched for age, sex and municipality of residence at the onset of diabetes in the Swedish longitudinal Econ-DISS database (the Econ-DISS database contains high-quality individual longitudinal register data from several population, labour-market and social insurance registers at Statistics Sweden). The initial analysis selected people born between 1949 and 1970 in Econ-DISS, and thus potentially active in the labour market already in 1990. The descriptive statistics indicate that people with type I diabetes do not differ from the control group in terms of level of annual income from work before the onset of diabetes. However, after onset, people with type I diabetes lag behind bit by bit. After 5 years the median annual income from work of people with type I diabetes was 95% of that of the control group. Further statistical analysis will include investigation of factors associated with this difference including the effect of the duration of diabetes (range 1-23 years in the sample), age, sex, level of education, parental education, employer characteristics, regional labour market characteristics etc.4 Indirect costs of diabetes will be examined more fully in future Changing Diabetes Barometer Reports.

71

appendix
The tables below summarise data recorded by six countries which have contributed detailed information referred to in the Chapter 4 case studies: India, Israel, Italy, Japan, Sweden and the USA. Table 1: BMI, % of population, 2006 Body Mass Index (BMI) = body weight (kg) divided by height squared (metres2)
Underweight BMI <18.5 India Israel Italy Japan Sweden USA 3.3 11.5 2.2 2.4 54.1 68.9 59.3 35.1 32.9 Normal BMI = 18.5-24.99 62.5 pre-obese BMI = 25-29.99 3.8 39.3 33.6 20.3 33.8 34.1 Obese BMI > 30 0.7 22.6 9.0 3.1 10.1 32.2 Total overweight BMI > 25 4.5 62.2 42.6 23.4 43.9 66.3

Source: WHO 2006. Global Database on Body Mass Index

Table 2: Diabetes prevalence, % of population aged 20-79, 2006

Population 20-79 years India Israel Italy Japan Sweden USA 659.57 m 4.30 m 44.0 m 97.33 m 6.46 m 208.67 m Diabetes patients 20-79 years 40.85 m 0.34 m 3.85 m 6.98 m 0.47 m 19.16 m Prevalence 6.2% 7.8% 8.7% 7.2% 7.2% 9.2%

Source: IDF Diabetes Atlas 2006

72

Table 3: Blood glucose (HbA1c), 2007

No. of patients

Data collection year India Israel Italy Japan 2007 2006 2000-2004 2006 (Hospitals) Sweden 2006 (Primary care) 2007 (Commercial) 2007 (Medicare) 2007 (Medicaid)

Diabetes Type

Treatment form

Geography

HbA1c (average) N/A N/A <7% 40.0% <7% 44.0% N/A <6% 23.0% <6% 51.0% <7% 41.8% 45.9% 30.2%

HbA1c distribution N/A 7-9% 46.0% 7-9% 43.8% N/A 6-7.5% 44.0% 6-7.5% 37.0% 7-9% 28.6% 26.8% 21.1% N/A >7% 14.0% <9% 12.2% N/A >7.5% 33.0% >7.5% 12.0% >9% 29.6% 27.3% 48.7%

T1 and T2 T1 and T2 T1 and T2 T1 (25-30%) and T2 (70-75%) T1 (2-4%) and T2 (96-98%) T1 and T2 T1 and T2 T1 and T2

All All All

National National National

187,000 139,147 16,934 34,293

N/A 7.4 (1.4) 7.1 (1.3) N/A N/A

All

National 79,164 N/A N/A N/A

USA

All

National

N/A

Note: Swedish HbA1c measurement has been validated by a collaboration between laboratories called Equalis, calibrated to the standard Swedish Mono-S method. As a result Swedish values for HbA1c are about 1 unit lower than values measures according to the international DCCT standard.

Sources: Israel: Quality Indicators for Community Healthcare in Israel. Ministry of Health / Health Council / The Israel Institute for Health Policy and Health Services Research, Italy: AMD 2007. Annali. Associazione Medici Diabetologi, Sweden: National Diabetes Register 2006, Japan: Kobayashi, M et al., 2006. The status of diabetes control and antidiabetic drug therapy in Japan a cross-sectional survey of 17,000 patients with diabetes mellitus (JDDM 1). Diabetes Research and Clinical Practice 73, 198, USA: National Committee for Quality Assurance 2007. The state of health care quality 2007. http://web.ncqa. org/Default.aspx?tabid=543

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references
7 The MODEL Group 2007. Diabetes: nding excellence? Facing the

Chapter 1
1 International Diabetes Federation 2006. Diabetes Atlas, Third Edition 2 Wilber, J A and Barrow J G 1972. Hypertension: a community problem Am J Med 52, 653 3 Worrall, G 1992. Screening for diabetes - an alternative view. Br J Gen Pract. 42, 304 4 Hart, J T 1992. Rule of halves: implications of increasing diagnosis and reducing dropout for future workload and prescribing costs in primary care. Br J Gen Pract. 42, 116

multi-faceted challenge of diabetes. 8 Quality and Outcomes Framework 2007. Information Centre for Health and Social Care. http://www.ic.nhs.uk/statistics-and-datacollections/audits-and-performance/the-quality-and-outcomesframework-qof 9 World Bank 2007. Public policy and the challenge of chronic noncommunicable diseases 10 Majikela-Dlangamandla, B et al. 2006. Diabetes monitoring in developing countries. Diabetes Voice 51, 28 11 Novo Nordisk 2006. Changing diabetes care in the developing world. Diabetes Voice 51, 26

Chapter 2
12 Alberti, K G M M et al. 2007. International Diabetes Federation: a 1 Teisberg, E 2007. Contribution to Changing Diabetes Advisory Board 13 Finnish Diabetes Association 2007. The Development Programme 2 International Diabetes Federation 2006. Diabetes Atlas, Third Edition 3 Hsaio, W and Heller, P S 2007. What should macroeconomists know about health care policy? IMF working paper WP/07/13 4 International Diabetes Federation 2007. The human, social and economic impact of diabetes. http://www.idf.org/home/index. cfm?node=6 5 Economist Intelligence Unit 2007. The silent epidemic: An economic study of diabetes in developed and developing countries. 6 Yach, D et al. 2006. Epidemiologic and economic consequences of the global epidemics of obesity and diabetes. Nature Medicine 12, 62 17 Mark Peyrot et al. 2005. on behalf of the International DAWN Advisory Panel. Psychosocial problems and barriers to improved diabe16 DAWN International Expert Advisory Board 2006. From practice and research to large-scale implementation: the 3rd DAWN summit. Diabetes Voice 51, 43 15 Diabetes Attitudes, Wishes and Needs 2001. http://www.dawnstudy.com 14 Tuomilheto, J et al. 2001. Prevention of type 2 diabetes mellitus by changes in lifestyle among subjects with impaired glucose tolerance. New England J Medicine 344, 1343 for the Prevention and Care of Diabetes in Finland 20002010 (DEHKO) http://www.diabetes. consensus on Type 2 diabetes prevention. Diabetic Medicine 24, 451

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tes management: Results of the cross-national Diabetes Attitudes, Wishes and Needs (DAWN) study. Diabetic Medicine 22, 1379 18 International Diabetes Federation 2004. Putting people at the centre of care. Diabetes Voice Special Issue: May 2004, 12. http:// www.diabetesvoice.org/issues/2004-05

7 Mohan, V, 2007. Epidemiology of type 2 diabetes: Indian scenario. Indian J Med Res 125, 217 8 Deepa, M et al., 2003. The Chennai urban rural epidemiology study (CURES-1). J Assoc Physicians India 51, 863 9 Ministry of Health and Family Welfare, India 2005-12. National Ru-

19 International Diabetes Federation Task Force on insulin, test strips and other diabetes supplies 2007. Surveys. http://www.idf.org/ home/index.cfm?node=1214

ral Health Mission 10 Yazaki, Y and Kadowaki, T 2006. Combating diabetes and obesity in Japan. Nature Medicine 12 (1), 73

Chapter 3
No references

11 Kobayashi, M et al., 2006. The status of diabetes control and antidiabetic drug therapy in Japan a cross-sectional survey of 17,000 patients with diabetes mellitus (JDDM 1). Diabetes Research and Clinical Practice 73, 198

Chapter 4
1 WHO 2006. Global Database on Body Mass Index. http://www. who.int/bmi/index.jsp

12 Sone, H et al., 2006. Outcome of one year of specialist care of patients with type 2 diabetes: a multi-center prospective survey (JDDM). Internal Medicine, 589 13 Kobayashi, M, 2007. Economic impact of diabetes cost on national

2 International Diabetes Federation 2006. Diabetes Atlas, Third Edition 3 Sources of HbA1c data: Israel: Quality Indicators for Community Health Care in Israel; Italy: 2007 AMD Annals, Associazione Medici Diabetologi; Sweden: Swedish National Diabetes Register, Annual Report 2006; USA: The State of Healthcare Quality 2007, National Committee for Quality Assurance 4 Das, A K, 2007. Personal communication

economy. Personal communication 14 US Federal Reserve System 2002. http://research.stlouisfed.org/ fred2/data/EXJPUS.txt 15 Gudbjrnsdottir, S et al., 2003. The National Diabetes Register in Sweden: An implementation of the St Vincent declaration for quality improvement in diabetes care. Diabetes Care 26, 1270 16 Stevens, R J et al., 2001. The UKPDS risk engine: a model for the

5 Kapur, A, 2007. Economic analysis of diabetes care. Indian J Med Res 125, 473 6 Indian Council of Medical Research 2005. Guidelines for management of type 2 diabetes

risk of coronary heart disease in Type II diabetes (UKPDS 56). Clinical Science (2001) 101, 671 17 Weiner, J P et al., 1995. Variation in ofce-based quality: a claims-based prole of care provided to Medicare patients with diabetes. JAMA 273, 1503

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18 Grol, R 1990. National standard-setting for quality of care in general practice: attitudes of general practitioners and response to a set of standards. Br J Gen Pract 40, 361

Chapter 5
1 The UK Prospective Diabetes Study Group 1998. Intensive blood-

19 US Department of Health and Human Services 2005. National Diabetes Fact Sheet. http://apps.nccd.cdc.gov/DDTSTRS/template/ ndfs_2005.pdf 20 National Committee for Quality Assurance 2007. The state of health care quality 2007. http://web.ncqa.org/Default.aspx?tabid=543 21 Vinicor, F and Engelgau, M 2006. Health insurance for all: the key to improved diabetes management? Diabetes Voice 51, 34 22 Pawlson, G 2007. National Committee for Quality Assurance. Personal communication

glucose control with sulphonylureas or insulin compared with conventional treatment and risk of complications in patients with type 2 diabetes (UKPDS 33). Lancet 352, 837 2 Stratton I M et al. 2000. Association of glycaemia with macrovascular and microvascular complications of type 2 diabetes (UKPDS 35): prospective observational study. BMJ 321, 405 3 National Institute for Health and Clinical Excellence (NICE) 2002. Type 2 diabetes Management of blood glucose. http://guidance. nice.org.uk/page.aspx?o=36881 4 National Institute for Health and Clinical Excellence 2007. Diabetes

23 World Diabetes Foundation 2005. Annual Report 24 Ramaiya, K 2006. A diabetes strategy for Africa: investing in health, protecting our people. Diabetes Voice 51, 10 25 Declaration of the Americas on Diabetes 1996. http://www.opsoms.org/English/AD/DPC/NC/dia-DiabetesMellitus.htm#dia 26 DOTA workshop on the quality of diabetes care 2002. Ocho Rios, Jamaica. http://ncd.bvsalud.org/dol/docsonline/5/1/015-DOTAWorkshop-on-Quality-of- Diabetes-Care.pdf

- Type 2 (update) Draft full guideline. http://guidance.nice.org.uk/ page.aspx?o=456661 5 Fox, K M et al. 2006. Prevalence of inadequate glycemic control among patients with type 2 diabetes in the United Kingdom general practice research database: A series of retrospective analyses of data from 1998 through 2002. Clin Ther 28, 388 6 Scotland diabetes survey 2004. http://www.diabetesinscotland.org/ diabetes/Publications.asp 7 Jonsson B 2002. Revealing the cost of Type 2 diabetes in Europe.

27 DOTA workshop on the quality of diabetes care 2003. Miami, Florida. http://www.paho.org/english/ad/dpc/nc/dia-miami-2003-nalrpt.pdf 28 PAHO / WHO (no date). PANAMERICAN STEPS, the PAHO/WHO stepwise approach to chronic non-communicable disease risk factor surveillance http://www.paho.org/English/AD/DPC/NC/panamsteps.htm

Diabetologia 45, S5S12 8 Williams, R 2005. Medical and economic case for prevention of type 2 diabetes and cardiovascular disease. European Heart Journal Supplements 7, D14 9 Williams, R et al. 2002. The true costs of Type 2 diabetes in the UK. Findings from T2ARDIS and CODE-2 UK. GlaxoSmithKline Uxbridge, UK

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10 Williams, R et al. 2002. Assessing the impact of complications on the costs of Type II diabetes. Diabetologia 45, S13 11 Shetty S et al. 2005. Relationship of glycemic control to total diabetes-related costs for managed care health plan members with type 2 diabetes. J Manag Care Pharm 11, 559

19 Regional Drug and Therapeutics Centre, Newcastle 2007. Cost comparison charts http://www.nyrdtc.nhs.uk/Services/presc_supp/ presc_supp.html?zoom_highlightsub=cost+comparison 20 Diabetes UK 2007. http://www.diabetesuk.org 21 Evans, M M et al. 2007. Increasing prevalence of type 2 diabetes in

12 Oglesby A K et al. 2006. The association between diabetes related medical costs and glycemic control: A retrospective analysis. Cost Eff Resour Alloc 4,1. 13 IMS Health 2007. Medical Ambition II: The direct cost of inadequate glycaemic control in type 2 diabetes in the UK setting. Basel Switzerland 14 IMS Health: Medical Ambition II - Supplement: Extension to newly diagnosed patients, Basel Switzerland, 2007. 15 Palmer A J et al. 2004. The CORE diabetes model: projecting longterm clinical outcomes, costs and cost-effectiveness of interventions in diabetes mellitus (types 1 and 2) to support clinical and reimbursement decision-making. Curr Med Res Opin 20, 5 16 Clarke, P et al. 2003. The impact of diabetes-related complications on healthcare costs: results from the United Kingdom Prospective Diabetes Study (UKPDS 65) Diabetic Medicine 20, 442 17 Mukhopadhyay B et al. 2006. A comparison of glycaemic and metabolic control over time among South Asian and European patients with Type 2 diabetes: results from follow-up in a routine diabetes clinic. Diabet Med 23, 94 18 Richelle J et al 2005. Changes in age at diagnosis of type 2 diabetes mellitus in the United States, 1988 to 2000. Annals of Family Medicine 3, 60

a Scottish population: effect of increasing incidence or decreasing mortality? Diabetologia 50, 729

Chapter 6
1 International Diabetes Federation 2007. The human, social and economic impact of diabetes. http://www.idf.org/home/index. cfm?unode=3B9691D3-C026-2FD3-87B7FA0B63432BA3 2 Novo Nordisk 2007. Changing the costs and benets of diabetes. II. Who is actually paying? 3 Green, A et al. 2006. The societal impact of diabetes mellitus and diabetes care Report 2: Type 1 diabetes in Denmark year 2001, and Report 3: Type 2 diabetes in Denmark year 2001 4 Carlsson K S 2007. Personal communication concerning research programme: Long-term consequences of the onset of diabetes for young adults. Longitudinal health-economic analysis of education, labour-market participation, income and health-care utilisation 1990-2005. Lund University Centre for Health Economics, Sweden. Financial support from Swedish Diabetes Association (DIA2005005; DIA2006-049) and from Novo Nordisk AS, Denmark, is gratefully acknowledged.

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