Download - Barometer Report - Final Version
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changing diabetes barometerFirst report
changing diabetes
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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
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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
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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
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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
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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
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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.
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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.
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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
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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.
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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
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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
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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
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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.
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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
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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.
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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,
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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 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
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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.
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
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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.
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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 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.
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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
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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.
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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.
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
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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
N
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.
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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 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
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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