changing diabetes barometerFirst report

changing diabetes

2Foreword 4

Preface 5

Executive Summary 6

1. Time to work together 101.1 Diabetes a story of missed opportunities 101.2 Meeting the challenge 111.3 The Changing Diabetes Barometer in context 12

2. Key Issues 142.1 Development of the Changing Diabetes Barometer concept 142.2 The economics of diabetes 142.3 Raising the capacity and competence of diabetes healthcare professionals 162.4 Expanding access to care 182.5 Improving self-management assessing non-clinical indicators 202.6 Summary of key issues improving quality of life for patients 22

3. The Changing Diabetes Barometer 243.1 What is the Changing Diabetes Barometer? 243.2 Inspiring and driving change 263.3 Organisation 283.4 The Changing Diabetes Barometer the future 293.5 Countries included in the Changing Diabetes Barometer survey 30

contents

3Changing Diabetes at the national level

4. National examples of diabetes care 344.1 Learning from best practice 344.2 Case studies 354.3 Overview of case studies what do they show us? 534.4 Novo Nordisk initiatives to improve control 544.5 Improving diabetes care in developing countries 55

5. Direct costs of diabetes 585.1 Controlling diabetes, controlling costs 585.2 Studying diabetes in the UK 585.3 Overview of the analysis 595.4 Economic costs of diabetes 635.5 Breaking even and moving into credit 645.6 Conclusion 66

6. Indirect costs of diabetes 686.1 What are the indirect costs? 686.2 The Danish example 696.3 Current study in Sweden 71

Appendix 72

References 74

4It is my firm 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 chal

lenge, and the effects of our efforts, is central to meeting the chal

lenge. 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 fight against this complex, chronic disease.

This is what the Changing Diabetes Barometer does.

By 2025 over 380 million people will live with diabetes. The challenge

presented by the diabetes pandemic is enormous. With the develo

ping 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,

forewordand all people at risk of developing the disease in the future. As it mea

sures 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.

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 increas

ing 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.

JeanClaude MbanyaVice Dean and Professor of Medicine and Endocrinology,

University of Yaound, Member of Changing Diabetes Barometer

International Advisory Board

5As a global diabetes care leader, Novo Nordisk has much to offer as a

partner in the fight 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

prefaceis 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.

Raising awareness of diabetes is, in itself, a challenge. The effects of this

devastating disease are complex and far reaching. All too often, how

ever, 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.

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 resolu

tion 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 fight 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 fight 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.

Lars Rebien SrensenCEO and President, Novo Nordisk A/S

6An innovative response to an urgent need

The Changing Diabetes Barometer is both a report and a concept: a

framework for measuring progress in the fight 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 Interna

tional 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 world has many excellent initiatives to provide care for people with

diabetes, but only a minority are able to benefit 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 longterm 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 coun

tries 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 fight against diabetes, where

we are succeeding and where we are failing, and inform decision mak

ers at all levels where to look for inspiring examples of how they can

do better.

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 re

stricted to published data. These countries experiences are analysed to

develop an understanding of the potential for improved diabetes care,

the difficulties 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 significant improvements; not only in the supply of

data, but in the medical outcomes reported. The Changing Diabetes

Barometer highlights their achievements and encourages other coun

tries and regions to build their own data systems. More than that, it

encourages them to look at their data, find the weak points, learn from

others and set about making the systems stronger.

The UN Resolution on diabetes, adopted on 20 December 2006,

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.

Key objectives

The Changing Diabetes Barometer has three objectives; to

illustrate the link between quality of diabetes care, reduction in com

plications and socioeconomic costs, thus providing all stakeholders

with the opportunity to make informed choices;

executivesummary

7improve 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 fu

ture, create an international baseline on the prevention, progress and

treatment of diabetes. It will communicate this information and incour

age 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 pro

gress. Data resources will be developed on the results from countries

participating in the initiative. These will include the indicators of dia

betes prevention, progress and treatment, plus information on the ex

istence 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 evi

dence, 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).

Key issues

If it is to call for a higher quality of diabetes care, the Changing Dia

betes 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

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 life

time 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 finding that because of reduced spending on the complications

of diabetes, up to 48% of the available funds used for enhanced treat

ment of diabetes could be spent not on complications, but on improved

care at an earlier stage of the disease. That would have enormous im

pact on maintaining and improving the patients quality of life.

The presence of sufficient numbers of adequatelytrained healthcare

professionals, and also of IT staff presents a challenge to data collection

but also an opportunity for the Changing Diabetes Barometer initia

tive 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 Diabe

tes 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.

Many developing countries have very acute problems. These include

lack of financial resources, availability of healthcare professionals, and

availability of adequate and uptodate training for them. Further chal

lenges may include cultural attitudes, access to medicines and hospitals,

and the sheer enormity of the size of populations and distances involving.

8Here, 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 reinvent. Access to adequate care is, of

course, also a challenge for the undiagnosed and poorly treated propor

tions 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 selfmanagement 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 influencing its success or oth

erwise of this also need to be measured and tracked. The Changing Dia

betes Barometer and its future use of DAWNinspired 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 first 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

first have to know what is already in place and we have to track how

the fight 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.

9

10

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

2079. 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.

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

benefit fully from them. As a chronic disease, diabetes takes many years

to run its course. During that time the availability of high quality treat

ment, 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 benefit from treatment at all and many

who are diagnosed fail to reach treatment targets.

Figure 1: The rule of halves

Among allpeople withdiabetes

50% arediagnosed

only 6% would havea succesful outcomeIf 50% of them

receive care

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.

1. timeto worktogether

11

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

0

10

20

30

40

50

60

70

Europe

Not diagnosed PwD (millions)N

orth Am

erica

Latin Am

erica

Western Pacific

South East Asia

Sub-Saharan Africa

Middle East

and North A

frica

Diagnosed but not treated PwD (millions)

Treated PwD (millions)

Source: IDF Diabetes Atlas 20061 and Novo Nordisk

In 2007 the actual proportions being diagnosed, receiving treatment,

achieving targets and achieving desired outcomes in diabetes varies sig

nificantly between different parts of the world and different treatment

regimes. Calculating them is dependent on the level of confidence that

is attached to the data at each stage. Published data from national

registers have the highest level of confidence, 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 fight 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 identified,

prioritised and action taken whether in prevention, diagnosis, or ef

fective treatment.

...we are driving diabetes care in the dark

Because of the missed opportunities to keep people with diabetes liv

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 2025

Diabetes prevalence (%) 6.0 7.3

Number of people with diabetes (millions) 246 380

IGT prevalence (%) 7.5 8.0

Number of people with IGT (millions) 308 418

*People with impaired glucose tolerance (IGT) have a significant risk of

developing type 2 diabetes. Source: IDF Diabetes Atlas 20061

1.2 Meeting the challenge

Diabetes care will not be improved significantly, 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.

12

only when outcomes are measured and compared can improvements be made

The present collection of disparate national initiatives for data collec

tion calls for a concerted approach to gather information and track

progress. The aim is, however, not solely to gather information; this

is only the first step. Instead, an international consensus is needed on

how to develop measurable and comparable improvements through

out the whole cycle of diabetes care. Scrutinising and defining exactly

what data would best inform healthcare payers, and policymakers,

decisionmaking 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 decisionmakers and

help bring diabetes out of the dark. People with diabetes would ex

perience an improved quality of life, savings to the healthcare systems

through avoidance of diabetes complications could be rechannelled

and the whole economy would benefit from a more productive work

force.

The Changing Diabetes Barometer initiative is a response to this urgent

and pressing need for concerted action.

1.3 The Changing Diabetes Barometer in context

Efforts to raise awareness of the serious potential of the diabetes pan

demic 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.

The UN Resolution was a major achievement for the IDFled Unite for

Diabetes campaign, as for the first time, national governments had ac

knowledged 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 scientific 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 organi

sations, patient organisations, healthcare, academia and the media. Its

objective was to spark a worldwide change, by inspiring all these dif

ferent 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

Diabetes Barometer would gather information on global progress in

the fight against diabetes. It would also be a source of international

inspiration, as it would provide healthcare providers and policymak

ers 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 affiliates

throughout the world. This survey suggested that, of the 21 countries

one third had no data on treatment indicators like HbA1c, blood pres

sure and lipid levels one third did not have data on incidence rates and

13

only a few had systems in place tracking important key indicators in a

dynamic registration database that enabled consistent followup 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 em-

ployees poor health is 2.5 3 times higher than the direct cost of

health benefits. 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 specifi-

cally 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 threepart 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, ef

ficiency and outcomes of diabetes healthcare interventions. Second, it

will communicate the information and encourage dialogue between

healthcare policymakers 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 informa

tion to stimulate and support national initiatives and projects which will

improve diabetes care.

MEASU

RE COMPAR

E I

MPR

OVE

14

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.

The Advisory Board identified 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 financial

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. Mak

ing 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 lifeyears. This is after all the aim

of diabetes care, to ensure that people with diabetes live longer and

betterquality 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 improve

ments mortality has been reduced by 41%; and spectacular increases

in life expectancy (average 18 years to 33 years) have been achieved

in cystic fibrosis, when publication of results led to changes in care

practices1.

publication of results led to changes in care practices

These suggestions lead to the idea of competition in healthcare, but this

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.

Better diabetes care will generate an improved return on the invest

ment constituted by spending on healthcare. Reliable, comparable re

cording will provide the substance for analysis and drive learning, lead

ing to identification 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 re

duces 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 policymakers, the

healthcare professionals, and most of all for the person with diabetes.

2.2 The economics of diabetes

The costs of diabetes are very significant to both the individual and to the

wider economy, and they are growing. As a chronic, noncommunicable

disease, diabetes places increasing burdens on both, in direct healthcare

costs and the indirect costs of lost productivity, social care and financial

losses to the individual. Using new approaches to recording diabetes care

will contribute substantially to improving the care itself and reduce the

costs, both financial 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 opti

mise the use of resources and achieve better value.

2. keyissues

15

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

Diabetes prevalence is increasing rapidly in both developed and devel

oping countries; the IDF estimates a rise from 246 million people with

diabetes worldwide in 2007 (6% of adults aged 2079) to 380 million

by 2025 (7.3%)2. The Western Pacific 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 longterm complications of diabetes, with associat

ed high treatment costs. The other key factors for diabetes are by now

deeply entrenched the trend towards Westernstyle 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.

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 influenced 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 activ

ity, 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.

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

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 grow

ing prevalence of noncommunicable diseases in relation to infectious

diseases means that the increasing call on governments healthcare

budgets may cause critical competition for finance within healthcare

and between that and other public services.

the magnitude of expenditure should demand that progress be measured

While in lowincome 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 medical and psychosocial effects of diabetes also give rise to costs

to society. Diabetes can involve suboptimal performance of employees

at work, time off work through illness or treatment requirements, pre

mature 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 five 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.

16

Figure 4: Effect of diabetes on productivity in five countries

2007 China Denmark India UK USA

Productivity loss, US $bn 20.5 1.3 20.4 3.3 41.4

Productivity loss, %GDP 0.6 0.4 1.9 0.1 0.3

Source: Economist Intelligence Unit5

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 public

sector services, or by family members, who may also incur loss of earn

ings 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 governmentsupported healthcare

services, so financial 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.

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.

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

significant 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.

2.3 Raising the capacity and competence of diabetes healthcare professionals

The current capacity and competence of diabetes healthcare profes

sionals 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 sufficient numbers of adequately

trained healthcare professionals.

Numbers of doctors and nurses are far from adequate in many develop

ing countries. In contrast, in developed regions, some of the case stud

ies 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 specific

context of diabetes, a number of initiatives are already under way, e.g.

programmes to train doctors, nurses and healthcare auxiliaries in India

17

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 activi

ties related to World Diabetes Day and the UN Resolution, will help by

drawing the attention of the worlds governments to the diabetes pan

demic and the need for the medical resources to curb it.

the Changing Diabetes Barometer will offer and share solutions as well as raising awareness

of problems

The medical profession will naturally ask for justification for collect

ing and sharing diabetes treatment data. The Changing Diabetes

Barometer initiative must show that taking part will create benefits

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 cen

tres 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 ex

perience 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 in

crease 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 file.

Professor Soffia 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 re-

corded data for ten years but just doing that does not help.

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

identified after a time lag.

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 dia

betes 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.

18

Information Technology

Barriers which could limit development of the Changing Diabetes Ba

rometer 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 invest

ment 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 file 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 peo

ple with diabetes, and support the efforts of healthcare professionals,

especially in relation to monitoring selfmanagement 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 policymakers, for developing

a culture of constructive competition and patient empowerment which

will combine to improve patient care and eventually reduce costs.

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

specific 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 financial resources, availability of health

care professionals and the infrastructure to support them, availability of

adequate and uptodate 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 them

selves 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 HIVAIDS, malaria and

tuberculosis. Yet the growth of chronic diseases already imposes sub

stantial costs and the World Bank estimates that they will become the

leading cause of death in lowincome 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 noncommunicable 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 longterm care alongside the present focus on

addressing acute infectious diseases. About threequarters of the dis

ability burden related to noncommunicable diseases, including diabe

tes, in low and middleincome 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 finance

treatment themselves, or to take family members out of employment

or school to care for relatives. The World Bank estimates that the di

rect 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 middleincome countries, total

diabetesrelated costs are highest in Latin America and the Caribbean,

19

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 self

monitoring, which is advocated by current good practice guidelines. In

many countries glucose meters and glucose testing strips are unavail

able or restricted to people on at least twicedaily insulin; urine test

ing 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 pro

vide education and other initiatives to promote lifestyle changes, in par

ticular aimed at improving diet and exercise, and offered in a range of

settings e.g. in the community, workplaces and schools. A key opportu

nity exists to screen people for diabetes and other noncommunicable

diseases during normal medical checkups, and to provide appropriate

treatment at as early a stage as possible. The underlying, major ini

tiative 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 programme11.

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 physi

cians in Malaysia.

At a political level, the World Diabetes Foundation has also supported

many initiatives to raise awareness of diabetes and its burden among

policymakers and the healthcare community in developing countries

including support for countries developing diabetes practice guidelines,

e.g. in subSaharan Africa, and mobilisation of multiple support for the

UN Resolution on Diabetes.

The relevance of the Changing Diabetes Barometer to these massive

practical, financial and political problems in developing countries is two

fold. 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 experi

ences will be relevant or appropriate to all, but within the Changing Dia

betes 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 de

veloped world for those who are at risk but unaware, undiagnosed, or

receiving inadequate treatment. The initial format for the Changing Dia

betes Barometer will include measures of BMI (as an indicator of preven

tion efforts), diabetes prevalence and average HbA1c (an indicator of the

quality of diabetes treatment). These three first 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 beneficial to

20

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.

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 meth

ods. 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 largescale population approach to the preven

tion 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 work

ing environment). The first 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 newonset

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.

2.5 Improving selfmanagement assessing nonclinical 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 dia

betes, rather than allowing it to control them. The Changing Diabetes

Barometer needs to develop ways to measure and communicate best

practice on effective selfmanagement and the provision of psychoso

cial support for people with diabetes.

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 reallife barriers to

optimal selfmanagement. It also studied ways to address the deficits

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 teambased patientcentred

selfmanagement supportive diabetes care and more recently to a focus

on largescale 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 aware

ness and understanding. Many DAWN initiatives have explored the

most effective options in providing information for people with dia

21

betes, including use of languageindependent 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 man

aging their longterm 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 psycho

logical issues that arise in developing individual care plans, and encour

ages personal participation in the decisionmaking involved. Coaching

in selfmanagement is a critical area which can be taught both to medi

cal 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 be

ing followed by expert analysis of how far the national healthcare sys

tems 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 programme15 (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 na-

tional programmes for diabetes care, it is only natural to draw on

the knowledge acquired by the DAWN programme in developing

the Changing Diabetes Barometer.

Surveys

Surveys and questionnaires, as exemplified by DAWN surveys, can be

used to gather information from individuals on nonclinical issues like

access to medicines and quality of self care. The Changing Diabetes

Barometer should consider the use of surveys to supplement hard bio

chemical data especially to provide information on issues such as ac

cess 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 de-

fined, how the data are gathered and how the population is defined.

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 increas

ing 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 find around the world, especially in

prevalence and incidence. We can also find 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.

22

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 eco

nomic aspect makes plain the unpalatable truth that millions of people

in the world currently stand little chance of attaining the level of diabe

tes care that is now possible for the relative few. Building the Chang

ing Diabetes Barometer is essential to put in place the mechanisms to

measure diabetes care, and demonstrate the resulting returns on invest

ment 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 sufficient number to of

fer 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 train

ing relatively unskilled young workers to assist in basic healthcare

screening, but many more are needed. The Changing Diabetes Barom

eter 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 devel

oping 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 pro

vide valuable evidence with which to influence the course of national

and international politics, in mobilising resources to improve healthcare

for these very numerous, very vulnerable people.

Finally, effective selfmanagement 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 significant investment in educa

tion and support the Changing Diabetes Barometer and its use of

DAWNinspired 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 initia

tive 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 pos

sible, 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 diabe

tes and we must continue to move towards this goal.

23

24

3.1 What is the Changing Diabetes Barometer?

The Changing Diabetes Barometer is a framework for measuring

progress in the fight against diabetes. It will provide healthcare profes

sionals, 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 fight against diabetesthe Changing Diabetes Barometer will describe what

progress is being made in the fight 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 pos

sible 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 fight 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 per

formance of their own efforts, benefit from the example given by oth

ers and drive improvements in diabetes care. Its objectives, therefore,

are to;

illustratethelinkbetweenqualityofdiabetescare,reductionincom

plications and socioeconomic costs thus providing all stakeholders

with the opportunity to make informed choices;

improve treatment through inspiring learningbasedonmeasuring

and comparing results as all stakeholders develop a clear picture of

the current quality of diabetes care in their country; and

inspireotherstofollowbestpracticeexamples.

The Changing Diabetes Barometer initiative seeks to impact the entire

diabetes care pathway. It divides this pathway into three categories:

Preventiontheincidenceofdiabetesandsuccessorotherwiseof

public health initiatives to prevent type 2 diabetes

Progresshowearlythediseaseisdiagnosedamongpeoplewithdiabe

tes (and whether they have already developed diabetes complications)

Treatmenthowwelltheyarecaredfor.

Through measuring and comparing information in all of these areas,

countries can focus their efforts where they are most needed and un

derstand where improvements can be made.

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

3. the changing diabetes barometer

25

the Changing Diabetes Barometer to highlight best practice to inspire

change. Joint efforts are needed from many stakeholders medical pro

fessionals, policymakers, international organisations and industry and

a stepbystep approach.

You cant manage what you cant measuremeasuring 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 diabe

tes care, and within countries in relation to other healthcare and eco

nomic 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.

The possible parameters to be measured are many and divide into three

categories:

Strategythenumberofcountrieswithadiabetesstrategy,moving

on in the longer term to assess the quality of strategies and the scale

of organisations in place to implement them

Measuresthenumberofcountrieswithupdateddataonprevention,

progress and treatment, in the longer term examining in more detail the

proportion of the population with BMI above 25, the percentage of peo

ple estimated to have diabetes who are diagnosed and the incidence of

complications already present at diagnosis, and the percentage of diabe

tes patients in good control as measured by a series of clinical indicators

Systems thenumberofcountries that track themeasuresabove

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

lenge of diabetes, the Changing Diabetes Barometer aims to encourage

collection of national or regional data on three important measures:

BMI(asanindicatorofpreventionefforts),

diabetesprevalence,diagnosisratesandpresenceofcomplications

at diagnosis, (an indicator of disease progress among the population

and in individuals) and

thepercentageofpeoplewithdiabetesinvariousHbA1cranges(an

indicator of the quality of diabetes treatment).

Eventually the Changing Diabetes Barometer should include more para

meters to build a more complete understanding of both the direct costs of

diabetes treatment and the indirect costs to the individual and to society.

Invest to saveonce the improvements begin, so do the rewards

The Changing Diabetes Barometer will add new momentum to the

collection of data on national healthcare provision for diabetes, and

through that to evidencebased advocacy. Once the starting point has

been measured, it will be possible for healthcare policymakers 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 financial and skills resources to other aspects of medi

cine. Employers will experience less productivity lost through illness of

employees. Social care costs will fall. In essence: measuring what dia

betes 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 under

stand 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.

26

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.

Measure, compare; learn and improveimprove the measurement and accessibility

of comparable information

At both levels, parameters to be measured over the successive stages

of disease will be defined 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 pre

vention, progress and treatment.

At both international and national levels, the aim is to improve the

measurement and accessibility of comparable information.

The international level inspire 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 prog

ress across countries to encourage constructive competition and, in the

future, create an international baseline on the progress 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

Best Cases

Drive change

Inspire change

National level

International level

Patient

Providers

Society

PayersIndustry

27

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 classified 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 includ

ing 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 treat

ment and there will be an inevitable delay in seeing the benefit of such

public health interventions.

The Changing Diabetes Barometer will be an increasingly potent and

influential resource as it gathers further information. National policy

makers will find it increasingly useful as a source of best practices and

to stimulate healthcare providers to improve their performance. As

analysis of the findings continues, more insight will be achieved on the

exact stages of diabetes care provision which are most in need of rein

forcement in order to achieve the greatest medical, social or economic

improvements.

The national level drive change

Sharing information drives innovationstimulate informed dialogue

At the national level the Changing Diabetes Barometer initiative will

stimulate informed dialogue on the necessity of measuring the treat

ment 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.

C

H

A

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G

E

Create awareness

Help facilitate dialogue with payers and policy makers

Activate healthcare providers and people with diabetes

Nurture the registration and capture of data

Generate and monitor measures and targets

Establish incentive systems and clinical decision support

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 coexistent condition would also ide

ally be measured.

Information at the national level will be accessible to a wide range of

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 policymakers to design plans

and targets appropriate for their own healthcare systems.

28

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 fore

see 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.

International Advisory Board Members contributing to this first report

Dr Richard M Bergenstal (USA)

Executive Director, International Diabetes Center, Park Nicollet, Minne-

apolis

Dr Jonathan Betz Brown (USA)

Chair, IDF Task Force on Diabetes Health Economics and Senior

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 Soffia Gudbjrnsdottir (Sweden)

Sahlgrenska University Hospital, Goteborg and Head of Swedish Dia-

betes 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

Professor JeanClaude 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

29

Professor V Seshiah (India)

Former Professor and former Head, Department of Diabetology, Ma-

dras Medical College

Professor Elizabeth Teisberg (USA)

Associate Professor, Darden Graduate School of Business Administra-

tion, Charlottesville, Virginia

Dr Giacomo Vespasiani (Italy)

Director of Centre of Studies and Research, and former President, As-

sociazione Medici Diabetologi (AMD), San Benedetto del Tronto

3.4 The Changing Diabetes Barometer the future

Three Changing Diabetes Barometer Reports are to be published at 12

month 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.

First Report, November 2007

This first report describes the concept of the Changing Diabetes Barom

eter 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 scar

city 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

possible at this stage to include data from all the 21 countries from

which people have given support to the project.

Instead the first report takes the opportunity to highlight the achieve

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 ben

efits. The report includes accounts of these initiatives and their achieve

ments and also the data for these countries relating to:

BMI

diabetes prevalence (percentage)

HbA1c (percentage in defined ranges)

The first 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:

StatusupdateonChangingDiabetesBarometeractivities2007-2008

Status on Changing Diabetes Barometer activities in pilot countries

Summary of Advisory Board recommendations in 2008

Statusupdateonmonitoringandtrackingofprogressofkeyindica

tors 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

C