The Future of Healthcare in Europe

The future of
healthcare in
Europe
Closing the
stakeholder gap
ngageze:: russe|s 8IJUFQBQFS
Report on an Engage Health
Cross-Stakeholder Conference
November 28th 2011
Sotel, Place Jourdan,
1040 Brussels, Belgium
Building a consensus
on how to sustain
the future of Europes
healthcare systems
Engage Health Alliance Europe
2
On Monday, November 28th 2011, around 70 people representing different parts of the healthcare
community met in Brussels under the auspices of Engage Health Alliance Europe. The meeting
aimed to start building a cross-stakeholder consensus on how to ensure the sustainability of
Europes healthcare systems in the face of ongoing nancial crisis.
This White Paper is a record of that event.
Mat Phillips,
CEO,
Report compiled by Kurt Soezen
Edited by Clive Nead, Mat Phillips and Alexandra Wyke
March 2012
3
on how to sustain
healthcare systems
Introduction 4
Executive summary 5
Session I: The nancial crisis in Europes healthcare systems 8
Session II: Healthcare innovation during a nancial crisis 15
Session III: Pan-European healthcare and patient organisations 21
Session IV: Cross-border healthcare 28
Conclusion: Clarity of direction 33
Appendix 1: Summary of the presentations at Engage Brussels 35
Appendix 2: List of attendees 47
Contents
on how to sustain
healthcare systems
4
Engage Health Alliance Europe was formed in late 2010 out of a belief that stakeholders from all
parts of the healthcare system have a role to play in planning the future of healthcare. Engage
emphasises the value that patient groups can bring to the planning process, and the importance of
the patient perspective.
In an effort to build a cross-stakeholder consensus on the future of healthcare, Engage holds two
major conferences a year. The rst was held in London in March 2011, and focused on the subject
of patient group and industry relationships. The second meeting, held in Brussels on November
28th 2011, was an opening step in the process of fashioning a dialogue on the future of Europes
healthcare systems.
This White Paper is an amalgamation of the discussions that took place during the November
2011 Engage Brussels meeting. The White Papers interpretation is that of Engage Health Alliance
Europe only, and should not be attributed to any particular attendee, speaker, chair or delegate. A
summary of the content of each speakers talk at the meeting can be found in Appendix I of the
White Paper.
Engage Health Alliance Europe would like to thank everyone who attended or supported the
November 2011 event. Engage looks forward to continuing to develop programmes of action with
you.
Tim Ball
Caroline Davis
Liz Johnson
Clive Nead
Mat Phillips
Edna Wolstencroft
Alexandra Wyke
Introduction
5
on how to sustain
healthcare systems
On Monday, November 28th 2011, around 70 people representing different parts of the healthcare
community met in Brussels under the auspices of Engage Health Alliance Europe. The meeting aimed
to start building a cross-stakeholder consensus on how to ensure the sustainability of Europes
healthcare systems in the face of ongoing nancial crisis. This White Paper is a record of that event.
Session I: The nancial crisis in Europes healthcare systems
The global nancial crisis has necessitated further containment of public expenditure on
healthcare, as called for by the International Monetary Fund (IMF).
However, even before the nancial crisis, healthcare spending was out of control, spurred on by
changing demographics, the adoption of unhealthy urban lifestyles, rising expectations among
educated younger people, and the increasing cost of innovatory healthcare products.
European nations hit hardest by the recession have also been those with the fastest-growing
healthcare bills.
Any cost-containment measures remain hampered by the fragmentation and lack of
coordination that pervades Europes healthcare systemsplus the absence of any political will
for major changes.
The healthcare systems of Greece, Slovakia, and, perhaps, Ireland, indicate what could happen if
economists have their way entirely in the running of healthcare systemsthe health of national
populations could suffer.
Session II: Healthcare innovation during a nancial crisis
The public purse can no longer unquestioningly afford to pay for the high prices of some
medicines. High prices discourage politicians and healthcare administrators from attempting to
iron out inequities in the healthcare system.
The process of R&D needs to be made more efcient. One way to do so is to reduce the
redundancy in the R&D system. Redundancy occurs when money is spent on developing
medicines which might later be rejected as cost-ineffective by government-appointed agencies.
That moneyhuge amounts of itis wasted.
Redundancy can be reducedeven avoidedif government and other important healthcare
stakeholders are allowed, at the earliest stages of the R&D process, to offer input as to what is
really needed.
The Innovative Medicines Initiative (IMI) is a new form of cross-stakeholder collaboration in
early-stage drug development. A collaboration between industry and the European Commission,
the IMI is now Europes largest public-private partnership (PPP).
Other innovative forms of collaboration for the purpose of innovation were discussed at the
Engage Brussels meeting, including co-creation or open innovation (varied communities with an
interest in R&D outcomes are engaged in the discovery-and-development processes).
Executive summary
on how to sustain
healthcare systems
6
Social media allows the formation of virtual communities capable of better engagement with
patients and the members of the public who use medicines.
Session III: How to engage with patients
The patient experience is a complex one that touches all aspects of a persons life beyond
treatment and care.
The patient movement has arisen to tackle the broader human issues involved with managing a
medical conditionand, hopefully, to even help people prevent conditions from occurring.
Patient groups have also adopted an advocacy role, and seek to improve healthcare systems to the
benet of patients.
Patient groups, such as the European Cancer Patient Coalition (ECPC) and the European Kidney
Patients Federation (CEAPIR), have worked hard at developing tools for engaging with patients
(and their representatives) at both local and national levels.
The patient movement now needs to be embraced in healthcare decision-making processes.
Industry, too, has an important role to play in embracing issues of importance to patients.
Industry can catalyse its networking capabilities across the range of healthcare stakeholders with
whom it already engagesthe overall intention being to improve the patient experience.
One of the IMIs newest initiatives, the European Patients Academy on Therapeutic Innovation
(EUPATI), a cross-stakeholder alliance that includes business and patient groups, is a case in
point. Launched in February 2012, the EUPATI aims to involve patients in drug development.
DAWN 2 (Diabetes Attitudes Wishes and Needs) is a currently-running global study supported
by Novo Nordisk. It aims to determine the needs that patients have when they try to manage
their condition. Novo Nordisk plans to make the results of DAWN 2 available in the public
domain to provide patients with the evidence to make their case for change to HTA authorities,
government and other healthcare stakeholders.
Session IV: Cross-border healthcare
Opportunities exist within the EU for national healthcare systems to work together in a
harmonious way to create efciencies, and to improve the health outlook of all European citizens.
So great are the disparities between average and best practice across Europe that merely
implementing existing best practice consistently would provide major improvements across all
EU national healthcare systems.
The 2011 Directive of the European Parliament and Council on the Application of Patients
Rights in Cross-Border Healthcare is an opportunity for greater cooperation across borders.
Healthcare systems in different European countries can benet from a pooling of expertise and
from economies of scale.
7
on how to sustain
healthcare systems
Many hurdles must be overcome, though, before cross-border cooperation can make such goals
attainableincluding difculties in deciding upon EU standards (pan-European medical data
are not readily available). In addition, the nancial recession has made European countries more
introverted, and, although EU citizens are far more mobile, sick patients prefer to stay at home.
Nonetheless, case studies of successful pan-European health initiatives do exist. One
example is the new web-based virtual community, Rare Disease Communities [http://www.
rarediseasecommunities.org], managed by EURORDIS, the European Organization for Rare
Diseases. Others are Health Consumer Powerhouses benchmarking system for consumer
satisfaction with national health systems, and also the campaign for the widespread adoption of
the European Charter of Patients Rights produced by Active Citizenship Network (ACN).
Conclusion
A tension evidently exists within governments and healthcare systems between the economic
imperative to cut costs in healthcare and the moral duty to provide high-quality healthcare to all
citizens. Economists will see the curbing of healthcare spend as virtuous. But, in some countries,
scal austerity packages are slowly eroding the capability of healthcare systems to deliver high-
quality services. The challenge is striking the right balance between thrift and patient safety. Factors
that should be considered by policymakers are:
How to liberate medical data, making it transparent.
Ensuring quality standards for healthcare information.
Improving efciency in healthcare.
Setting gold standards.
Granting doctors the right to use their discretion when prescribing.
Developing new stakeholder communities to offer input to healthcare innovation.
Harnessing the power of e-health.
Developing effective mechanisms for cross-stakeholder consultation.
on how to sustain
healthcare systems
8
Session I:
The nancial crisis in Europes
healthcare systems
Total health expenditure as a proportion of GDP (2009 or nearest year) from
Health at a Glance, an annual report by the Organisation for Economic Co-
operation and Development (OECD)
An overview
Karen Taylor, head of Deloitte UKs new Centre for Health Solutions, opened the November 2011
Engage Brussels meeting with an overview of the current nancial crisis, and an estimate of how
healthcare might be affected.
She noted that national healthcare systems were in trouble even before the global nancial
meltdown. Healthcare spending has been rising across Europe for decades as populations contain
an ever-larger proportion of older people, and as the costs of long-term care increase. Individuals
are living longer, but increasing numbers of people are becoming chronically ill (sometimes
because of physically-inactive urban lifestyles). Diabetes is a case in point. In 2010, 6.9% of people
in Europe had diabetes; by 2030, the gure is expected to rise to 8.1%
1
. Sick people may also suffer
from more than one chronic disease (co-morbidity), adding further complexities to their treatment
and care.
Karen Taylor explained to the meeting that the most dramatic increases in healthcare spend are
evident in some of the European countries most heavily hit by the current scal crisisGreece,
Spain and Portugal. Public spending on healthcare in Portugal grew from 1.5% of GDP in 1970 to
7.2% of GDP in 2006; in Spain, from 2.3% to 6.0%; and in Greece, from 2.3% to 5.9%
2
. Moreover,
many of the more recently-incorporated EU Member States increased expenditure on healthcare
during the rst decade of the new millennium, seeking to put their countries healthcare systems
on a par with those in EU peers. The high cost of that investment policy now burdens these
aspirational countries.
1. Source: International
Diabetes Federation (IDF).
2. Bartosz Przywara,
Projecting Future Healthcare
Expenditure at European
Level: Drivers, Methodology
and Main Results, European
Commission Directorate-
General for Economic and
Financial Affairs, 2010 [see
http://ec.europa.eu/economy_
nance/publications].
9
on how to sustain
healthcare systems
Further pressures have been placed on healthcare spending by younger people who are more
articulate than previous generations in demanding that healthcare systems meet their needs and
wants. Well educated, and armed with unprecedented levels of Internet-sourced information
about healthcare, demanding younger users of healthcare services refer repeatedly to the growing
inequities in the provision of medical care that occur when spending on healthcare varies from
nation to nation, or even within the same country (as it does in all European countriesthough
more in some than in others).
Ajai Chopra, the IMF and healthcare
Ajai Chopra is a Deputy Director of the
IMFs European Department, and oversees
the Departments work on various advanced
and emerging-market countries. He is also
currently the mission chief for the United
Kingdom. Ajai Chopra was previously in the
Asia and Pacic Department, and led the
IMFs Korea programme.
Stephen McMahon, CEO of the Irish
Patients Association (IPA), told the audience
at the Engage Brussels meeting about a workshop held in Ireland the
previous month. At that October 2011 event, Ajai Chopra, Deputy
Director of the European Department of the International Monetary
Fund (IMF), said that bad decisions by the global banking system
had caused the current nancial crisis, and that the self-regulatory
framework of the nancial markets failed to prevent any build-up of
risk.
1
Today, with all European nations carrying too high a public debt,
and all affected in some way by the global scal crisis, healthcare is
1. Ajai Chopra, Strengthening the Financial Stability Framework of the EU; address to the 2011 Dublin
Economic Workshop, Kenmare, Ireland, October 15th 2011.
widely viewed across the continent as a prime cost-cutting target. The
IMF has predicted that the nancial problems faced by healthcare
systems will intensify over the next two decades, exacerbated by
expensive advances in medical technology. Healthcare reform, insists
the IMF, will be a key scal policy challenge in coming years. The
so-called troika of the IMF, EU and the European Central Bank has
therefore proposed a variety of options for analysing and containing
public health expenditures, including:
1. Increasing patient cost-sharing, to control unreasonable patient
demand.
2. Eliminating tax exclusions to the private health insurance schemes
run by employers for their employees.
3. Modifying provider payments, to impose a harder budget
constraint capable of bringing greater efciency among health
professionals.
4. Improving the cost-effectiveness of evaluations for new and
existing technology, so that only technologies providing the
greatest overall benet are reimbursed.
5. Reducing the generosity of the publicly-nanced health benets
package, with access rationed through waiting lists and other
regulatory policies.
Source of text above and photo left: VoxEU.org
Life expectancies in
London fall from west
to eastas illustrated
by a journey on the
London Underground
3

3. Analysis by the London
Health Observatory using
Ofce for National Statistics
data revised for 2002-2006;
diagram produced by the
Department of Health (DoH).
on how to sustain
healthcare systems
10
Warnings from Engage Brussels 2011
Medical innovations can help to ease the scal burden of healthcare spending, but the technology
itself often comes with a high price tag. Yet, most drugs (even the newest) still treat symptoms only,
rather than cure disease, and so do not diminish the populations burden of sickness.
Karen Taylor informed the Engage Brussels conference that the average cost of bringing a drug
from concept to patient is now US$1.3 billion. The process of drug discovery and development is
loaded with regulations that aim to improve the quality and safety of products. Meeting these high
standards is costly.
Meanwhile, the number of specialists has expanded across Europe to keep pace with the growing
complexity of medical technology. According to OECD data, specialists now exceed generalists in
numbera trend that has further swelled the cost of the healthcare workforce.
How governments are tackling healthcares nancial crisis
Governments across Europe have responded in two ways to the nancial crisis,
to the heavier demands on healthcare systems and to the increased cost of
innovation. They have tried to improve the productivity of healthcare systems,
and raise more capital funds through tax rises, insurance hikes, and increases
in patient co-payments.
Thwarted by fragmentation, uncoordinated planning and lack
of political will
Attempts to improve the efciency of the healthcare system have, thus far,
had questionable effects. Efciencies within hospitals free up beds more
quickly, for instancebut discharged patients still need outpatient care within
the community, so the overall level of activity within the healthcare system
is unchanged, or may even increase. In any case, the number of hospitals
in Europe stands in excess of need, and the average cost of a hospital stay
continues to rise.
Meanwhile, lack of co-ordination inside the wider healthcare system leaves
healthcare workers inappropriately located, with some elements of a healthcare
system overstaffed, and others struggling to cope with understafng. The UK National Health
Service (NHS) is a case in point. It tried to reform during the rst decade of the new millennium,
attracting better staff with increased pay-and-incentive schemes, and imposing novel work patterns.
But the reforms failed to alter fundamental working practices, and no cost efciencies resulted;
ironically, as healthcare spend rose, only infrastructure improved, not productivity.
The World Health Organization estimated in 2005 that 80% of diseases are preventableso
the potential for prevention to generate cost savings in healthcare budgets must be huge. But
governments still channel only a small fraction of their healthcare outlay into public health
interventions that hope to halt the rise of lifestyle-related conditionsmainly because most of the
Improving the management of
existing health spend
Techniques deployed are typically:
Taking expenditure out of the
hospital sector, and investing more in
community carechanging the skill
mix of the workforce.
Improving the healthcare systems take
up of technology.
More effective focus on earlier
diagnosis.
Emphasising the support of older and
more vulnerable members of society.
Investing in prevention and self care.
Source: Karen Taylor, Engage Brussels 2011
11
on how to sustain
healthcare systems
benets accruing from preventive medicine do not become evident within normal political lifetimes.
Karen Taylor observed that the UK is a good example of the widespread trend towards non-
investment in prevention. Only 4% of UK healthcare spending is directed at public health initiatives.
Data to inform UK patients and to involve them in managing their own healthcare do exist, but,
in practice, the UK healthcare system, like that of virtually all other countries, is oriented towards
ghting res that have already broken out, not in preventing them from occurring.
In short, the failure of attempts to better manage costs can be attributed to a lack of transparency
that pervades the healthcare system, an absence of data on how to measure productivity, and a lack
of political will.
Raising further capital to fund healthcares costs is prevented by a lack of political desire to
impose higher levies on a cash-strapped public during a nancial recession. In Germany, the public
vehemently resist increases in their insurance premiums. German citizens already put up with
substantial sums being diverted from their salaries to pay for healthcare. A 2010 Deloitte survey
of 1,000 German healthcare consumers found that the respondents held a low regard for their
national healthcare system compared to that of citizens in other countries. German consumers
entertain mixed feelings about policy changes that affect their healthcare system. The majority of
Germans favour reduced insurance costs
4
.
Dangers ahead
Stephen McMahon, CEO of the Irish Patients Association (IPA), told the Engage Brussels meeting
that one of the longer-term results of the recent economic crisis might be that economists
ultimately take over prescribing decisions from doctors. Stopping such a prospect from being
realised, he said, will require more cooperation between policymakers, regulators, providers and
patients. At present, though, decision-making on how to reform healthcare in the light of the new
scal austerity has failed to involve patients (or even other key stakeholders).
Birgit Beger, Secretary General of the Standing Committee of European Doctors (CPME),
told the Engage Brussels meeting that she was hopeful that prescribing determined by economic
considerations alone would not become dominant:
The principle of justice in medical ethics gives healthcare professionals the responsibility to look at
the cost-effectiveness dimension of healthcare. However, pure economically-driven considerations would
be against fundamental EU principles, and contrary to the patient-centred care that has been proven to
lead to better health outcomes.
The rights of Europes patients to good healthcare are further enshrined in the 2005 Luxembourg
Declaration on Patient Safety, which stated: Access to high-quality healthcare is a key human right
recognised and valued by the European Union, its Institutions and the citizens of Europe. Accordingly,
patients have a right to expect that every effort is made to ensure their safety as users of all health
services.
5
Despite these reassurances, the case studies below show, rightly or wrongly, that the greater
emphasis being placed on scal austerity in healthcare is beginning to have a negative impact on
health outcomes.
The future prospects for Europes healthcare

systems remain good. However, these systems have a great
disadvantagethey rely on policymakers (supported by
society) being able to constantly make wise collective choices.
Stephen McMahon, CEO, Irish Patients Association (IPA)
4. http://www.deloitte.com/
view/en_US/us/Industries/
US-federal-government/
center-for-health-solutions/
health-care-consumerism/
18c570028ceb7210VgnVCM20
0000bb42f00aRCRD.htm#
5. http://ec.europa.eu/health/
ph_overview/Documents/ev_
20050405_rd01_en.pdf
on how to sustain
healthcare systems
12
c
a
s
e

s
t
u
d
y
Tragedy in Greece
Kathi Apostolidis told the Engage Brussels meeting that Greece, like other countries in Europe, is
facing three huge changes in its socioeconomic make-up: an ageing population; an increasingly
large poor segment of the population less able to take care of its own healthcare (and which
requires more and costly treatment); and growing numbers of immigrants with health problems.
Each of these long-term trends adds to the burden imposed upon the Greek healthcare system by
the countrys severe economic problems.
Even before 2010, when the EU and IMF agreed to a rst bail-out economic package to
prevent Greece defaulting on its debts, the Greek healthcare system was inefcient and struggled
to cope with demand. Although Greek state healthcare is a relatively young conceptestablished
only in 1983the systems inherent faults make it surprisingly vulnerable to economic down-
turns. 35 mandatory social insurance funds operate in Greeceall are expensive to run, all have
a large staff, and all need reforming. The healthcare system owns huge quantities of overpriced
medical apparatus, bought when the good times led to uncontrolled purchases of expensive
equipment. Much of the technology sits idle; few healthcare workers are properly trained to use
it. The healthcare system is devilled by an endemic lack of accounting, a lack of audit, a lack of
measurement, and no evaluation of the scale of the problem. The state has no control over the
distribution of medicines, leading to abuse of cost controls, and of distribution practice.
Following the EU/IMF 2010 bail-out, Greece has been forced to slash its healthcare budget. No
consultation about the cuts has been made with patients (at the time, or since). Greek hospitals
today are starved of money. Broken-down equipment is no longer repaired or replaced. Hospital
patients have to arrive with their own bed sheets, as the supplies in hospitals were never audited,
and the hospitals, in any case, lack the funds to replace them. Unable to pay medical suppliers,
hospitals have built up debts. Suppliers, in turn, have responded by refusing to bring in more
products until bills are paid. Some drug companies have been reduced to insisting upon cash
payment before passing over medicines. Doctors are told not to prescribe more than three
medicines to a patient at any one time, and patients with multiple medical conditions can no longer
get all of the medicines they need. Fiscal reformers in Greece seem to take no account of the patient
experience.
An October 2011 article in The Lancet, Health Effects of Financial Crisis: Omens of a Greek
Tragedy , which described the deteriorating healthcare scenario in Greece:
Overall, the picture of health in Greece is concerning. It reminds us that, in an effort to nance
debts, ordinary people are paying the ultimate price: losing access to care and preventive services, facing
higher risks of HIV and sexually-transmitted diseases, and, in the worst cases, losing their lives. Greater
attention to health and healthcare access is needed to ensure that the Greek crisis does not undermine
the ultimate source of the countrys wealthits people.
The situation in Greece has ramications for the whole of Europe.
13
on how to sustain
healthcare systems
c
a
s
e

s
t
u
d
y
Irelands healthcare system
Irelands spending on healthcare represents around 9.5% of its GDP. Stephen McMahon, CEO
of the Irish Patients Association, listed for the Engage Brussels meeting some news items from
the Irish press between July and November 2011announcements indicating that standards in
the countrys health service have been steadily falling, even before Ireland found itself in serious
nancial difculties, and was forced to take a 85billion EU-IMF bailout in November 2011 (see
table below).
Stephen McMahon told how a government memorandum leaked in October 2011 revealed the
scale of the savings which would have to be clawed back from Irelands healthcare system after the
EU-IMF bailout deal:
Citizens (including 39% of low-income people and children) to be charged 50 annually for
their medical card.
An increase in the number of people being given just the medical card that supplies entitlement
to a GP visit only, rather than the card allowing full cover.
Patients (including low-income patients) to be charged 2 per prescription (up from 50 cents).
800 public nursing-home beds to be closed.
Reduced Home Care assistance.
In November 2010, the Irish government announced that part of the EU-IMF rescue deal
involved cutbacks in welfare programmes. Two billion Euros of the cuts are to be drawn from two
traditionally sheltered sectors, education and healthcare. The remainder of the cuts will come
from reductions in public-sector pay, early retirement, sale of state assets, and other restructuring.
With 70% of Irelands healthcare budget going on xed costs (staff overheads), only 30% can be
considered as a primary target for savings.
Stephen McMahon believed that the dangers to patients are tangible if steps are not taken to
include all stakeholders in decisions made on future healthcare reforms.
Month in 2011 Announcement in Ireland
July James Reilly, Minister for Health, announces that no one will wait more than 12 months for a procedure
(used to be a 3-month wait).
July-August The National Treatment Purchase Fund (NTPF) ceases booking patients for treatment.
September Waiting time of more than 3 months but less than 12 months increased by 20%, compared with 2010.
Waiting time of more than 12 months increased by 25%, compared with 2010.
November Private-stock residential nursing-home beds are forecast to rise in number to 20,000 by 2021, an increase of 65%
(the public version costs 1,245 per week per person, versus 865 in the private system).
November Pharmacists call for vulnerable patients not to have to make co-payments for prescription charges.
November 4.5million additional budget given to some hospital emergency departments to alleviate crises (total acute
budget estimated to be 7 billion).
on how to sustain
healthcare systems
14
Doctors in Slovakia
Slovakia is as badly hit by the economic crisis as any other country in Europe, and Slovak
government employees across the board face wage cuts. In September 2011, more than 2,000 Slovak
hospital doctors resigned, declaring that they would walk out when their contracts ended in early-
December 2011. The doctors were unhappy with a Slovakian government proposal to privatise the
countrys state-owned hospitals, believing that the move would culminate in greater inequities in
the supply of healthcare services. At the same time, the Slovak doctors were also calling for better
working conditions and a pay rise, to bring their salaries more in line with those of their peers in
the rest of Europe. Even before the doctors protest action, Slovakia was short of surgeons and other
hospital specialists.
On November 28th 2011, the government declared a state of emergency, ordering the doctors to
return to work under threat of criminal proceedings and possible imprisonment.
The Slovak governments response alarmed many in the medical profession, both in Slovakia and
abroad. The Standing Committee of European Doctors (CPME) supported Slovakian colleagues:
The President of the Slovak Republic, Mr Gasparovic, recommended that the Slovak government
use force against the Slovak doctors in case of failure of negotiation in ve days. This step would be
unprecedented in the life of European doctors, and is totally unacceptable. The General Assembly of the
Standing Committee of European Doctors strongly protests against this action. We call on the decision-
makers in Slovakia to use peaceful means only in the debate with the Slovak physicians, and to search
together for the best solution to their problems.
The protesting doctors nally called off their strike action just before Christmas 2011. Their
position had been weakened by a government offer of a moderate increase in their monthly
salary, by the governments ability to bring in relief doctors (particularly military doctors) from
neighbouring countries, and by the results of polls taken in Slovakia which showed that the
majority of the countrys population had become tired of the Slovakian doctors assertive posture.
c
a
s
e

s
t
u
d
y
15
on how to sustain
healthcare systems
Session II:
Healthcare innovation during
a nancial crisis
Healthcare is undergoing a technological revolution. Scientic innovators from across a spread of
disciplines are promising healthcare products with immense benetsfrom drugs that can cure
cancer, to nanotechnologies that circulate in the blood stream to seek out and destroy disease,
to electronic highways that reach out to people in their homes, enabling patients to look after
their own medical needs. The hope offered by these discoveries is, however, matched by equally
impressive price tags. Researchers feel that they need nancial rewards if the entrepreneurial spirit
is to continue to be cultivated.
The challenges facing innovators
Richard Bergstrm, Director General of the European Federation of Pharmaceutical Industries and
Associations (EFPIA), opened the Engage Brussels session on innovation by calling for a change in
the attitude by those involved with the discovery processes. Innovators (at least in his eld of drug
innovation) traditionally assume that payers of healthcare should reimburse
without question inventions that possess therapeutic merit: We innovate, and
you pay.
Times have changed. Nowadays, before a pharma company can earn income
on an R&D investment, the company has to justify the value of its products to
a broad range of stakeholders. The cost pressures that strain all of the globes
national healthcare systems impose a new condition on all medical inventors: that
R&D output must not only be useful, but cost-effective. Providing proof of cost
effectiveness in itself adds to the cost burden. The result is that the investment
required to support innovation is spiralling ever upwards.
Pricing and inequities
A particularly unfortunate consequence of the high price commanded by novel medicines is that,
often, the cost of purchase lies outside the reach of the poorwhich may mean entire countries.
So worrisome are the disparities in access to medicines that the European Commissions laudable
goal of every citizen being entitled to the highest-quality medicine has become little more than a
pipedream in Europe.
Only the prot motive is left to primarily drive R&D today
Public investment in basic medical R&D has sharply declined over the past decade in Europe,
leaving industry alone to carry the torch of innovation. Most medical R&D in Europe is now
conducted by prot-making entities answerable to shareholders. The situation can be short-sighted,
allowing critical patient needs not perceived to have an inherent commercial value to often be
overlooked.
The big question
The question that was therefore asked in this session of Engage Brussels was: How can industry
marry the costly task of innovation with the needs of European governments and patients?
The Innovative
Medicines Initiative (IMI)
is a new model for building
stakeholder partnerships in
the early phase of R&D.
Richard Bergstrm, Director General,
European Federation of Pharmaceutical
Industries and Associations (EFPIA)
on how to sustain
healthcare systems
16
Revolution in the innovation process
Richard Bergstrm believed that one way of lowering the sizeable cost of innovation would be to
change the nature of the process of invention. The pharma industry factors redundancy into the
task of drug discovery. Many candidate drugs are tried; some go as far as testing in animals and
humans, only to be abandoned at a later stage for any number of different reasons. Among the
most important of these reasons is that, years after the R&D investments are made, society rejects
the discovery as not cost-effective. Such waste could be prevented if the people who decide whether
healthcare systems might benet from the introduction of a new pill or gadget were involved at
those early moments in the R&D process when pharma scientists simply put their heads together to
try to guess what the world of healthcare needs.
Richard Bergstrm noted that the Innovative Medicines Initiative (IMI), which began operating
in 2007, was born out of a desire to do just thisto build stakeholder partnerships in early-phase
R&D. The Initiative brings together industry, patient groups, and health providers under the
auspices of the European Commission and EFPIA. Each of the latter two are due to contribute 1
billion to the IMI in 2012, making the Initiative Europes biggest public-private partnership (PPP).
PPPs have many inherent advantages. With science becoming more complex, the need for
collaboration grows. Until recently, the IMI was mostly a European affair. But research cannot
always be bound by geographic boundaries, and, in June 2011, the Initiative formed a partnership
with the Critical Path Institute of Arizona, which shares similar objectives to the IMI.
The Innovative Medicines Initiative (IMI)
From the outset, the Innovative Medicines Initiative gave itself a double duty. Firstly, the Initiative
aimed to look at the state of play in R&D within both industry and academia. Secondly, it would try
to determine what new medical interventions society needed, but was not getting.
The simpler activity within the IMI remit has proven to be the setting of research targets (for
example, in 2012, the IMIs twin research priorities are tackling antibiotic resistance and building a
pan-European chemical-compound library and screening centre). The more difcult task is how to
make the R&D process more effective, exible, and capable of delivering the goals that the IMI sets.
One constraint on the IMI is that industry will provide it with capital solely for work conducted
in the pre-competitive phase of researchthat is, research which is too far up the earliest stages of
the R&D pipeline to be of any signicant commercial value.
c
a
s
e

s
t
u
d
y
17
on how to sustain
healthcare systems
Building a more efcient R&D system through other models of engagement
Manufacturing industry approaches consumers to nd out what they want as a rst step before
deciding what products are made and sold [see Ileana Weltes talk at the Engage Brussels meeting,
mentioned later in this report]. Yet the very idea of asking citizens about medical research goals
seems shocking to many healthcare scientists. Part of the reluctance to involve ordinary people
is rooted in the belief that medical science is just too complex for the population to understand.
But such notions are being dispelled. An Internet-savvy general public is not only interested in the
nuts and bolts of science, but is also more willing to question whether the whole scientic R&D
framework behind medical innovation works to societys advantage.
Jacqueline Bowman-Busato is the Executive Director of the European Platform for Patients
Organizations, Science and Industry (EPPOSI), a Brussels-based, independent, not-for-prot,
partnership-led, multi-stakeholder think tank. One of EPPOSIs major objectives is to examine how
policies governing innovation in healthcare can be changed to promote European citizens to be
integral in the process of creating new and improved products and services. Jacqueline Bowman-
Busato told the Engage Brussels meeting that if users of medical technology participate in each phase
of innovation, they are more likely to welcome what the results of that innovation has to offer.
The challenge then, said Jacqueline Bowman-Busato, is to develop the skills of listening, keeping
personal agendas in check, and going forward as a team.
She told the Engage audience that EPPOSI ran a March 2011 focus group looking at how
a bottom-up approach can facilitate effective innovation to provide new and improved
healthcare products and services. During 2012, EPPOSI hopes to develop evidence-based policy
recommendations on how to streamline the facilitation of a bottom-up approach to innovation
in healthcare. The results will ultimately be developed into a practical guide to creating healthcare
services with better input from the people who will actually use the innovation.
Rapidly-expanding social media networks will help healthcare innovators reach out to relevant
communities and to include users in their R&D programmes.
S
o
u
r
c
e
:

E
P
P
O
S
I
The model for
co-creation
on how to sustain
healthcare systems
18
Social media, health apps and e-health
As wireless technologies link up with smart phones, regular home monitoring becomes nancially
realistic. And as more medical data is committed to electronic format (and methods found
to standardise e-medical language), social media and e-health systems may hook up with one
another, so that doctor and patient can sustain contact outside the doctors ofce or the hospital.
Continuous feedback of personal vital signs
should enhance the performance of medical
therapies. The entire combination affords new
opportunities for radically different forms of
healthcare interventionsand novel scientic
exploration.
Two representatives from e-health industries
then described to the Engage Brussels meeting
their approach to innovation.
Skye Van Raalte-Herzog, CEO of California-
based company Expanded Apps, described to the
Engage Brussels meeting why and how the health
app revolution is taking hold.
The term app is an abbreviation of
applicationtechnological jargon for a computer
program. Apps are created by writers, designers,
programmers (usually called developers) to perform certain tasks, or to offer certain services.
Apps may be written to run on the Internet, on computers, or, more recently, on Internet-enabled
smartphones. Such phones travel everywhere with their owners, and so any health apps loaded onto
the devices can supply continuous serviceunlike the traditional ofce- or hospital-located doctor.
60% of the worlds population has a mobile (sometimes called cell) phone.
5 billion mobile/cell phones exist worldwide.
Mobile phones are owned and used even by some of the more vulnerable and hard-to-reach
sections of the population.
Mobile phones can be used by their owners around the clock, seven days a week.
The apps that run on the smart versions of mobile phones are often either free, or affordable to
even to the poorer members of society.
Apps can entertain, provide information, or help the phone owner organise their life.
Apps work instantly, so the services they provide to the phone owner are available at a moments
notice.
A sizeable proportion of health apps are aimed at health professionals. But increasing numbers
are now designed solely for patients. The best patient-oriented health apps can provide meaning
to patients who are trying to self-manage their medical conditions.
19
on how to sustain
healthcare systems
219 million people in Europe use social mediaplacing the region ahead even of the usage levels
found in the USA. 52% of European social media users are men; 48% are women.
Not all social media users are young. Linkedin numbers 100 million member users, the majority
of whom are aged 55-plus.
Skye Van Raalte-Herzog explained that her rm, Expanded Apps, provides educational tools
which raise patients understanding of how their bodies and their health interrelate. Originally
funded by the pharma industry for health professionals, the companys apps are now offered to
the public (so competitive is the apps market that the prices of apps must be very low, bringing
health apps within easy reach of patients). A massive effort, utilising the input of medical experts,
goes into ensuring the accuracy of the data in Expanded Apps products. Expanded Apps partners
for health-related topics with content providers, such as McGraw-Hill and a medical animation
publisher. The medical animation is lively, yet scientically-accurate.
Skye van Raalte-Herzog told the Engage Brussels audience that the next important breakthrough
in health apps will be a transition from the provision of mere healthcare information towards
interaction with and between users. Health apps, noted Skye van Raalte-Herzog, have a tangible
future as a tool for self-care and as a means of promoting better health outcomes. Less than half of
health professionals adhere to ofcial evidence-based guidelines, as determined in clinical trials.
Health apps allow people to help themselves to the best healthcare information, take the right and
appropriate medicine, at the right time, and know when to seek medical advice, if necessary.
Ileana Welte, Head of Global Sales at Robert Bosch Healthcare GmbH, talked to the Engage
Brussels meeting about how her company (well known among consumers for its garden tools,
car safety systems and washing machines) moved into the healthcare market. The companys
knowledge of, and closeness to, ordinary consumers meant that Bosch entered healthcare from a
unique starting point and with a skill set unlike that of the more traditional medical manufacturers.
The Bosch approach was different immediatelythe companys healthcare subsidiary began by
nding out what the public most wanted from healthcare.
Health apps have a tangible future as a tool for self-care

and as a means of promoting better health outcomes.
Skye Van Raalte-Herzog, CEO, Expanded Apps
The Health Buddy
on how to sustain
healthcare systems
20
Market research led the company to believe that a product which could help chronically-ill
patients remain outside of hospital would be a winner. But if ill patients are to be able to stay at
home, rather than in hospital, they need to have regular contact with, and feedback from, their
doctorswho, in turn, need biometric data on their patients. Bosch saw the design of devices that
channel personal medical information between patient and doctor as a rst step in reducing the
necessity for patients to be in hospital. The company website states:
The Bosch Telehealth Plus system (sometimes known as Health Buddy) connects patients and care
providers on a regular basis, providing individual patient care. The current condition (and historic
conditions) of chronically-ill patients are communicated, and positive behaviours can be reinforced, to
help to ensure healthier and happier patients. This regular patient assessment aids in avoiding the costs
that would otherwise have been associated with attendance at accident and emergency (A&E) units, or
with inpatient hospital treatment.
The Bosch-style telehealth approach brings other advantages. It permits greater transparency in
the doctor-patient relationship, builds in more accountability, and, therefore, raises the standards of
such relationships for all.
A 2011 study in the US, Integrated Telehealth and Care-Management Program for Medicare
Beneciaries with Chronic Disease Linked to Savings
6
, explored the economic benets of using
remote patient monitoring (Health Buddy systems) combined with physician-led, patient-centred
care management for 1,767 patients. The patients in the study had chronic obstructive pulmonary
disease (COPD), congestive heart failure, and/or diabetes mellitusall conditions that require
costly care because of the large number of times the patients end up in A&E. The research,
undertaken by Dr Laurence Baker, Chief of Health Services Research, and Professor of Health
Research and Policy at Stanford University, found that Health Buddy systems generated 7% to
13% of cost savings every three months in the care of the patients using them. Equally importantly
(though further research is needed to verify the nding), the Health Buddy system seemed to be
linked to improved mortality rates among users.
6. Integrated Telehealth and
Care-Management Program
for Medicare Beneciaries
with Chronic Disease
Linked to Savings, Health
Affairs, September 2011;
http://content.healthaffairs.
org/content/30/9/1689
21
on how to sustain
healthcare systems
About the patient movement and its role in healthcare reform
John Bowis, President, Health First Europe, and Vice-President, European Health Forum Gastein,
who chaired the Engage Brussels session about the patient movement and its role in healthcare
reform, pointed out that many factors affect health, including access, culture, income, and lifestyle.
All inuence a persons overall health, not just the diseases from which they are suffering. John
Bowis believes that too much emphasis is placed on tackling illnesses, and not enough priority
given to achieving improvements in peoples health. The challenge, though, is coordinating services
that address patients varied needs, while engaging the patient in the process.
According to Alexandra Wyke, CEO of PatientView, a person who has just been diagnosed
with an illness (particularly a serious one) often feels frightened. Fresh challengesa stream
of unfamiliar experiencesappear in all areas of the daily routine of the newly diagnosed.
The issues involved are complex, and can embrace both mental health and physical wellbeing.
Other individuals become associated with the new patients health problemsthe family, health
providers, society, the public. In fact, plenty of people try to help patientsacademics, providers,
payers, regulators, medical suppliers, and policymakers. But not all of these important healthcare
stakeholders can fulll all of the relevant needs of people
living with chronic conditions all of the time. In part, the
patient movement grew to ll the gaps.
Patient groups have grown in number dramatically
during the past two decades. The largest elements of
the patient movement reect subject areas in which
patients feel most let down by the system [see chart,
above]. Patient groups have long networked among
themselves and with the patients they represent. The
advent of, rstly, the Internet, and, latterly, social media,
have made patient groups better at doing both. Patient
groups are now not just able to communicate easily with
their constituencies on a regular basisthe very process
of cross-communication has deepened their familiarity
with the ups and downs of the people they represent. To
full patient needs, patient groups, in some cases, supply
practical services (such as access to consultants, monetary grants for patients, and a few even own
their own hospitals).
As the patient movement has multiplied, many patient groups have grown adversarial in nature,
determined to lobby policymakers with the intent of getting the patient experience improved.
Their role as advocates has been recognised by governments. Patient representatives are consulted
at international, national and local level about future healthcare policy. Charlotte Williamson, a
patient activist who was vice-chair of an English local health authority, draws parallels in her 2010
book, Towards the Emancipation of Patients
7
, between todays patient movement and previous
Session III
Pan-European healthcare and
patient organisations
Specialisation within the European
patient movement
By percentage of the total of 63,000 European
patient groups in the PatientView database
1 Mental health 15.6
2 Neurological 11.8
3 Cancer 7.5
4 Diabetes 5.4
5 General disability 5.3
6 Heart 3.8
7 Communication disabilities 3.6
8 Rare/genetic 3.4
9 Older people 3.2
10 HIV/AIDS 2.6
Source: PatientView, 2012
7. Towards the Emancipation of
Patients: Patients Experiences
and the Patient Movement,
2010
on how to sustain
healthcare systems
22
Europe needs a new interpretation of social solidarity,

with citizens utilising self-empowerment to ensure that
healthcare systems are more sustainable nancially.
Alexandra Wyke, CEO, PatientView
campaigns of emancipation (including those of slaves, blacks, women, and homosexuals). Ms
Williamson predicts that the patient movement will be as successful as those preceding efforts
with patients perspectives and rights set to form an intrinsic part of healthcare thinking.
Patient groups have been accused of inating patient demand, and thereby unnecessarily
straining healthcare systems. But the groups also campaign for sustainability in national healthcare
systems.
Patient-centeredness as a way forward
Current methods of trying to rein in healthcare costsnancial rationing, gatekeeping systems,
and performance-related pay for health professionalshave produced two noticeably undesirable
side effects. Firstly, they have unsettled the medical profession, making its members feel increasingly
dissatised with their jobs. And, secondly, they have induced suspicion among patients that the
healthcare system and doctors no longer put patient needs above the necessity to save money.
As we read above, new approaches to health reform are called for, requiring greater involvement
from the community and patients. Patients and the public will be obliged in future to assume more
responsibility for their own care, and to adopt healthier lifestyles. Europe is inevitably heading
for a new interpretation of the customary notion of social solidarity, with citizens utilising self-
empowerment to ensure that healthcare systems are more sustainable nancially (the more you
look after yourself, the more you look after your healthcare system). Such patient-centeredness
could introduce multiple benets, including better compliance with treatment, improved self-care,
and still more patient empowerment (which the World Health Organization regards as vital if
global health disparities are to be decreased
8
).
But much will have to change if patients are to be positioned at the heart of healthcare
practiceespecially when patients views of their healthcare needs and wants are frequently at
odds with health providers and policymakers estimates of those needs. Many obstacles have to
be overcome. The mechanisms by which the views of patients are accommodated into decisions
on health cost-containment remain to be denedand implemented. And if patients opinions
continue to be generally dismissed as an invalid component within scientic evidence, then patient
testimony will only slowly feed into measures taken to improve health services. Patients and the
groups representing them therefore need to see greater recognition of the fact that their views are
scientically valid, and that they can contribute to debates about cost-containment and health
policy.
This is what patients in Europe want. But how can they get it?
8. What is the Evidence on
Effectiveness of Empowerment
to Improve Health?, WHO
Regional Ofce for Europes
Health Evidence Network
(HEN), February 2006, 4
23
on how to sustain
healthcare systems
Relating to communities
The European Cancer Patients Coalition (ECPC)
Patient groups specialise in reaching out to patients. Patient groups identify common desires
among patients, and design paths of action to accommodate those needs. Martin Lohr, Policy
Ofcer of the European Cancer Patients Coalition (ECPC), described to the Engage Brussels
meeting the evolution of his pan-European organisation. He spoke about the internal conicts and
challenges that the ECPC has had to be face, and how it has tried to resolve them.
The ECPC started life in 2003, aiming to become the voice of all cancer patients in Europe. It
hopes to achieve this goal through a membership structure that functions on democratic lines.
Today, the ECPC has 320 national member organisations, located in 42 countries. The challenges
of managing such a variety of patient groups, representing the interests of people with very diverse
types of cancer, are massive (as are the language and cultural differences between groups). Many
member groups operate under a national mandate; others are regionally oriented. A number of
organisations may be described as strong, and speaking with one voice, while some remain less
condent. Groups also vary in their level of knowledge of EU politics, or even about how EU
law applies in their countries. And, all the while, the groups themselves are in a constant state
of ux. Personnel, for example, may changecancer patient groups are often staffed by people
with the illness, who can suddenly fall ill or die. Some member cancer patient groups are quick
to see the value of the information passed on to them by the Coalition, and will react quickly to
it. Other groups are more passive. The ECPC regards the contrast among the groups as a positive
development, which ensures that no single member group dominates the Coalition.
The ECPC has acted on several fronts to prevent conicts and difculties from emerging
among its distinctive body of member patient groups. The organisation has placed emphasis on
communication between its members, mostly through the Internet and the ECPCs e-facilities.
Following consultations with members and patients, the ECPC has also build an advocacy tool kit
Cancer in Europe
1-in-3 Europeans is diagnosed with cancer. Almost every family in
Europe is touched in some way by this devastating disease. Cancer
is the second most-common cause of death after cardiovascular
disease.
In 2006, more than 2,2 million new cases of cancer were diagnosed
across the European Union, and more than 1.1 million people died
from the disease.
Every day, more than 6,000 Europeans are diagnosed with cancer,
and 3,000 die from the disease.
Breast, prostate, colon and lung cancers are (in that order) the
most common forms of cancer. Together, they accounted for more
than half of the cases of cancer in the European Union in 2006.
Breast cancer is the most common form of cancer among women,
accounting for 30.9% of all cases, and 16.7% of cancer deaths in
women. Although less common in women than in men, colon
and lung cancer are the second and third most-common causes of
death from cancer in women.
Prostate cancer is the most-frequently diagnosed form of cancer in
men, accounting for 24.1% of all cases and 10.4% of cancer deaths
in males. Lung cancer continues to be by far the most common
cause of cancer death in men, followed by colon and prostate
cancer.
Most of the other cancersfortunatelyappear in smaller
numbers, affecting up to 5-in-10,000 people in the EU.
The incidence of cancer in children and adolescents in Europe is
increasing. However, survival rates have improved dramatically
over the past few decades.
Screening programmes can help reduce deaths from certain
cancers, yet, in some Member States, they are poorly implemented
or even non-existent, despite the Council Recommendation on
Cancer Screening for colon, cervical and breast cancer, adopted by
EU Health Ministers in 2003.
In 2006, within Member States and across the EU 25, there
were wide variations in outcomes and signicant inequalities
depending on access to information, geographic location, age,
gender, socio-economic status and access to best quality care.
Cancer survival is signicantly lower in eastern European
countries (including the latest Member States) than in the EU 15.
The number of Europeans with cancer will increase in future
years, largely due to the ageing population.
Source: ECPC
c
a
s
e

s
t
u
d
y
on how to sustain
healthcare systems
24
to support members activities and their understanding of the EU scene. This tool kit comprises
a step-by-step guide to organising patient conferences, and a handbook on topics of critical
importance to European cancer patient groups, including: EU policy, legislative procedures and
measures in the eld of cancer; the use of EU Declarations and Guidelines as a political tool;
relevant pieces of EU legislation (such as the Clinical Trials Directive or the European Union
Directive on Cross-Border Healthcare); plus information on how to build a patient group website,
how to work with industry, and information on patients rights.
ECPC-run events are another mechanism employed by the Coalition to enhance members
knowledge of each others national concerns and ways of working. ECPC events are held in
members countries, and allow the staff of member groups to meet to discuss important issues
(such as how to facilitate patient access to treatments, or how to win political support for a
campaign). To reach out beyond its member groups to other healthcare stakeholders, the ECPC
runs joint workshops with peer patient groups, health professionals, and Members of the European
Parliament (MEPs). The ECPC initiative Forum Against Cancer Europe (FACE), launched
in June 2010, is one example. A sub-body of the ECPC, it aims to align the European cancer
patient community with European Parliamentarians (some 90 MEPs are currently committed to
promoting action on cancer as an EU priority).
These structures of support for member groups and for related stakeholders have helped
the cancer community come together behind the ECPC whenever the Coalition campaigns in
Brussels to improve cancer prevention, screening, early diagnosis and treatment across the EU.
ECPC campaigns in 2012 will call for cancer research in the EU to move in two denite directions:
rstly, address the range of needs of all cancer patients, and, secondly, translate into therapies with
minimal waste of money, expertise and time.
The European Kidney Patients Federation (CEAPIR)
Nadine Stohler, President of the European Kidney Patients Federation (CEAPIR), informed the
Engage Brussels meeting about the Federations aims on behalf of kidney patients across Europe.
Founded in 1981, CEAPIR lists 23 member patient organisations from different European
countries. The legal seat of the organisation is in Vienna; the working ofce in Dublin; the
President is Swiss. Nadine Stohler noted that differences in language, or in interpretation of
issues, do not prevent CEAPIR member groups from sharing the common objectives of boosting
the prole of renal disease on the EU public-health agenda, and of promoting the well-being,
treatment, and living conditions of kidney patients.
As is the case with the ECPC, activities intended to achieve CEAPIR objectives are undertaken
through cooperation among member groups, and jointly with peer organisations (including a
fraternal organisation, the European Kidney Health Alliance [EKHA], an alliance that brings
together health professionals, researchers, and patients and families).
CEAPIR aims, like the ECPC, to make sure that political decisions occur with the inclusion of the
c
a
s
e

s
t
u
d
y

c
o
n
t
i
n
u
e
d
c
a
s
e

s
t
u
d
y
25
on how to sustain
healthcare systems
Kidney disease in Europe
At present, more than 250,000 patients in Europe are being treated
with kidney dialysis machines, or have had kidney transplants. The
number has more than doubled over the past fteen years.
If this trend were to continue, national governments would need
to spend between 3% to 5% of their annual healthcare budgets on
renal-replacement therapies (gures that, even so, do not take into
account the wider costs of kidney diseaseadditional medical
expenses, decreased quality of life and life expectancy, increased
morbidity, and reduced capacity to work).
Patients on renal-replacement therapy currently face problems.
The access to, extent of, and quality of kidney-disease services
varies greatly throughout the EU. Most importantly, opportunities
for patients to receive the best and most cost-effective treatment
kidney transplantationare restricted by a shortage of kidney
donors.
The Directive of the European Parliament and of the Council on
Standards of Quality and Safety of Human Organs Intended for
Transplantation was adopted in July 2010.
The Directive standardises procurement, testing, characterisation,
preservation, transport and transplantation of human organs
among the EU 27, and will help the movement of suitable donor
organs between Member States.
The Directive is accompanied by a 10-point Action plan on Organ
Donation and Transplantation, which lists priority actions that
Member States could take to increase the availability of organs for
transplantation.
Source: European Kidney Health Alliance (EKHA)
patient perspective. CEAPIRs key campaigns focus on the promotion of organ transplantation and
donation. And, above all, CEAPIR is ghting for the right of patients to have choice of treatment.
Public and patient ignorance permit the continuation of disparities in access to treatment for
kidney conditions. Nadine Stohler said: Patients have no idea what treatments are available. In
Slovenia, for instance, only dialysis is felt to be appropriate. But this is merely because the head of clinic
in one of the countrys main hospitals believes this, and he forces the issue. CEAPIR is consequently
advocating for greater empowerment of patients with kidney disease, convinced, also, that such
empowerment can improve patients ability to self-care.
Many factors can inuence a patients ability to self-care in kidney disease. Kidney patients need
to check blood levels, blood pressure, nutritional quality, diabetes (if they have the condition), as
well as possible skin and bone conditions. The kidney patient needs a particularly large amount
of information to make an educated judgement during self-care. Yet patients with kidney disease
are usually scheduled to visit a clinic just once a year. A lot of learning has to take place during the
short time of that consultation, insisted Nadine Stohler. Not least, the patient needs to know what
questions to ask during the brief visit. The consultant may bring out technical jargon with which
the patient is unfamiliar. Ideally, less well-informed patients should have someone present who can
interpret the specialists comments in lay-persons terminology. Even better-informed patients may
fail to exploit their time in the consultation roomthey may ask questions that the specialist is
reluctant to answer, for fear of inducing worry or confusion.
Kidney patients thus face many hurdles beyond the problems brought about by their illness.
Better communication and relationships between kidney patients and their doctors are key
necessities. Otherwise, patients with a kidney problem can be faced with a long list of what they
cannot dowhen what they really want is merely the ability to enjoy life.

c
a
s
e

s
t
u
d
y

c
o
n
t
i
n
u
e
d
on how to sustain
healthcare systems
26
The role of industry
Industry and patients share mutual goals. Patients and industry alike welcome innovation, and
both would like to see greater investment in medicines and medical technology. Sren Skovlund,
Director of Global Patient Research, Advocacy and Support at Novo Nordisk, pointed out to the
Engage Brussels meeting that the relationship between industry and patients ideally needs to
become more professional. How can this be done? The starting point, believes Sren Skovlund, is
for industry to allocate research resources to examine the world from the patient perspective. Issues
of importance in a patient-centric world are access, support, respect, involvement, and high-quality
information.
Should industry wish to assist patients in expanding their role in healthcare, it has the advantage
of already possessing relationships with all of the major healthcare stakeholders. To date, the
various stakeholders have tended to work in silos, following their own internal remits (not
always with the patient viewpoint fully in mind). But industry can help facilitate truly balanced
stakeholder dialogue, for the purpose of creating sustainable, patient-centred models which
increase medical and societal support to people with chronic illness, while reducing the total
burden of disease.
Large multi-stakeholder structures are indeed beginning to emerge to promote patients interests.
In September 2011, the UN held its rst ever High-Level Meeting on Prevention and Control of
Non-Communicable Diseases. The conference emphasised to governments the need for action
against age- and lifestyle-related diseases.
Sren Skovlund noted that a useful role looks like being played in Europe by the Innovative
Medicines Initiative (IMI)s new European Patients Academy on Therapeutic Innovation (EUPATI),
which will be co-ordinated by the European Patients Forum (EPF), along with 26 leading pan-
European patient organisations, academic bodies, and not-for prot organisations, and European
Federation of Pharmaceutical Industries and Associations (EFPIA) member companies. The EPF
website explains that the Academy will be set up in 2012, and that it will ...
... educate patient representatives and the lay public on personalised and predictive medicine, the
design and conduct of clinical trials, drug safety and risk/benet assessment, pharmaco-economics,
as well as patient involvement in drug development. EUPATI will provide educational material in six
European languages, targeting eleven European countries.
In other words, the EUPATI seeks to open up the so-called black box of clinical research,
acquaint the lay public with the boxs supposedly esoteric contents, and ensure that ordinary people
start understanding the scope, value and limits of medical innovation. Once informed, patients
and the public can contribute to the medical innovation processeven, perhaps, developing
appropriate standards for the conduct of R&D. The EUPATI programme is a novel approach that
embeds the patient at the very heart of its programme, and encourages industry to dene common
agendas and platforms for sustainable change.
Even when these overarching structures have had an effect, Sren Skovlund envisages that
some health professionals will still not be fully versed in the patient agenda (or be convinced why
How can one bring people together,

without losing the voice of the individual?
Sren Skovlund, Director, Global Patient Research, Advocacy and
Support, Novo Nordisk
27
on how to sustain
healthcare systems
they should become so). So, in addition to promoting the top-down approach, industry can also
contribute by supporting the development of best practice at ground level, and by helping dene
what those better practices may be. Sren Skovlunds company, Novo Nordisk, for example, is
currently working in this area, undertaking a large-scale study called DAWN 2 (Diabetes Attitudes
Wishes and Needs), the aim of which is to bring new, 360-degree knowledge and insights about the
experiences and needs of people with diabetes, and about all of the different stakeholders that have a
role in supporting them. The original DAWN study, carried out a decade ago, revealed major gaps
between the psychosocial and educational support needs of people with diabetes.
At the end of the current DAWN-2 project, Novo Nordisk and a range of international and
regional stakeholders in the eld will attempt to dene new innovative ways by which people with
diabetes can be supported in living full, healthy lives, and in being actively involved in managing
their own health at home, in connection with family/friends, in the community, and in conjunction
with society.
The DAWN-2 study is currently ongoing in 18 countries (Algeria, Brazil, Canada, China,
Denmark, France, Germany, India, Italy, Japan, Mexico, the Netherlands, Poland, Russia, Spain,
Turkey, the UK, and the US). More than 16,000 respondents (including people with diabetes, their
family members and healthcare professionals, payers and patient organisation representatives) will
participate. The results of the study will be made available in the public domain, so that patients
and patient groups, as well as payers, policy-makers, and healthcare profesionals can all utilise the
data in their campaigns to improve healthcare delivery to create more patient value for money.
on how to sustain
healthcare systems
28
Aspirations ...
Opportunities exist within the EU for national healthcare systems to work together in a
harmonious way to create efciencies, and to improve the health outlook of all European citizens.
That, at least, is the theory. As Nick Fahy, Consultant, and former Head of the Health Information
Unit, DG Health and Consumers
9
, noted, however, the inequities in healthcare across Europe are so
great that the widespread adoption of best practice by national healthcare systems would in itself
bring massive healthcare benets to EU citizens.
Although national healthcare systems in Europe remain the responsibility of individual EU
Member States, the EUs role in healthcare is growing, said Nick Fahy. Today, the European
Commission funds new technologies and research, invests in developing infrastructure and
training, strengthens cooperation between health
professions, and, in 2011, saw its proposal on cross-border
healthcare accepted EU-wide. Nick Fahy believes that
patients need to develop as good an understanding as
possible of this European dimension to healthcare if they
are to take advantage of the opportunities that it provides.
The 2011 Directive of the European Parliament and
Council on the Application of Patients Rights in Cross-
Border Healthcare will be operational across Europe in
the coming years. The Directive is not just a new legal
framework; it is also an opportunity for cooperation
across bordersfor example, through direct cross-border teamwork in healthcare, or through
participation in European reference networks. The economies of scale and the pooling of expertise
generated by cross-border collaboration can allow healthcare to become both more efcient, and to
be able to improve outcomes for patients.
The European Union is not the only body on the scene with an interest in cross-border harmony.
European nancial funds are also increasingly seeing the infrastructure, human capital, R&D, and
new technologies of healthcare as potential areas for investment.
... and reality
Difculty in deciding upon EU standards
Gaining agreement upon which EU-wide healthcare standards are attainable can be a protracted
process (particularly as the approaches towards delivering optimum care differ widely among
European countries). Not every tactic that works in one country is suitable for another. Obvious
opportunities for co-operation exist in several subject areasespecially in e-health. Medical
records can be emailed across borders to help patients. Nick Fahys interest is in research that hopes
to reduce disparities in healthcare by better transferring innovations throughout the healthcare
systems of the EU.
Session IV
Cross-border healthcare
9. http://www.
nickfahyconsulting.eu/
WhyItMatters.htm
The gaps across Europe between

average and best practice are so wide, and
the performance of systems so varied,
that just implementing existing best
practice consistently would provide major
improvements for all EU health systems.
Nick Fahy, Nick Fahy Consulting, and former Deputy Head of Unit,
Health Strategy, DG Health and Consumers, EC
29
on how to sustain
healthcare systems
Financial hardships have made countries more introverted
The new scal austerity, however, has proved a barrier to EU harmonisationeven when the
potential benets of closer cooperation are compelling (as they can be with e-health). Countries
have become more inward-looking, focusing on achieving cost reductions at national level, rather
than on looking Europe-wide and taking advantage of economies of scale.
Medical data are not readily available
Data is rarely shared freely between Europes national healthcare systems. Politicians reluctant
to pass on their countrys health statistics take refuge behind EU regulations such as the Data
Protection Act, arguing that patient condentiality is paramount (though medical information
can be passed without revealing patient identity). Yet, without such data, policymakers are less able
to make the decisions that can result in the best health outcomes for the amount of Euros spent.
Industry, too, remains secretive, worried in case transparency undermines competitiveness. Nick
Fahy believes that patients are well placed to pressurise political and healthcare systems into making
healthcare data more widely available. But the public remain suspicious that their privacy will be
eroded in the process.
Consumers may be mobile, but sick people prefer to stay at home
Europes citizens travel across borders to holiday, and are sometimes willing to seek employment
in other countries, but people who fall ill usually prefer to trust only their own national healthcare
system. Sick patients long to remain out of hospital, staying at home, close to family and friends.
Cultural and language differences abroad act as an inhibitory factor on cross-border healthcare.
on how to sustain
healthcare systems
30
Three case studies in cross-border healthcare
While an argument can be made for healthcare to be managed across European borders, the
difculties and restrictions involved in getting Member States to act in harmony seem daunting.
Three further speakers told the Engage Brussels meeting about how a European vista might be good
for European healthcare.
Healthcare across borders for patients with rare diseases
Denis Costello, Web Communications Manager at the European Organisation for Rare Diseases
(EURORDIS) described to the Engage Brussels meeting how the non-prot organisation was able
to unify the interests of its members.
EURORDIS was helped in this task, he said, by the fact that people with rare diseases share a
common set of health-related problems, even though as many as different 8,000 rare diseases are
thought to exist. The EU denes a rare condition as one that affects only one person in 2,000.
Collectively, however, up to 29 million people in Europe are living with a rare disease. EURORDIS
has transcended national boundaries on behalf of this large patient constituency by bringing
together 492 patient groups from 46 countries into a single rare-disease web-based communication
and education tool, Rare Disease Communities [http://www.rarediseasecommunities.org], which
was launched in April 2010. The venture is a collaboration with the US non-prot National
Organization for Rare Disorders (NORD).
Patients can visit Rare Disease Communities to learn about their condition, and be provided
with tools for living with their condition. The content is enriched with patient testimonials, which
can be shared widely. Patient and family members meet together online to discuss and share new
information, and to provide peer support. Individuals can host their own social network sites, or
contribute to the information collected, thereby improving the quality of the resource. The site,
which is available in ve languages, is nanced though a mix of public and private funding (all
given according to a strict set of guidelines).
Rare Disease Communities already hosts 14 live rare-disease communities, with more in
development. The key to the projects swift success has been the way that the various rare-disease
communities have been prepared to come together and interact with one another for a common
cause.
c
a
s
e

s
t
u
d
y
31
on how to sustain
healthcare systems
A different approach to reforming healthcare systems
Johan Hjertqvist, President of Sweden-based think-tank Health Consumer Powerhouse (HCP), told
the Engage Brussels meeting that data about healthcare systems is still too limited and unreliable
to permit proper overall benchmarking of the performance of these systems. However, by focusing
on the consumer perspective, HCP has found a way of monitoring and comparing the healthcare
systems of 35 European countries. The groups key measurement tool, the Euro Health Consumer
Index (EHCI), launched in 2005, looks at indicators that measure the efciency of health services
for users. The last EHCI produced by HCP, the 2009 Index, ranked the healthcare system of the
Netherlands as the best in Europe, and that of Bulgaria the worst.
The next Index is due to be published in May 2012. Much has happened to affect healthcare
systems across Europe since the rst Index appeared in 2005not least, a nancial recession
has required countries to seek further economies from their already cash-strapped healthcare
services. Meanwhile, European citizens have continued a trend towards becoming more mobile
and internationalholidaying, and sometimes working, abroad. Public awareness of the differing
standards of healthcare services across Europe has been heightened by media reports (including
those about the EHCI). Publicity about under-performing healthcare systems puts pressure on the
governments involved to take corrective action.
Todays healthcare policymakers are obsessed with squeezing the best value out of the money
they invest in healthcarethe biggest bang for their bucks, said Johan Hjertqvist. When the EHCI
compares the amount of money spent per capita by healthcare systems, the Netherlands system
(though not cheap to run) can still be seen as supplying some of the best value for money. However,
for the most part, noted Johan Hjertqvist, any correlation between the amount of money spent
on healthcare in a country, and the standards of the healthcare services received by that countrys
patients, is affected by many other inuences, toocultural, organisational, and so forth.
Johan Hjertqvist asked the audience at the Engage Brussels meeting to consider waiting lists as
a mechanism for rationing services. Norway, Poland, Portugal, Spain, Sweden, and the UK all rely
on waiting lists to keep their countrys patients queuing for care. But, once again, he explained, no
evidence can conrm that nations utilising waiting lists achieve lower health expenditure per capita.
A new way forward is needed, argued Johan Hjertqvist. The future of healthcare systems, he
said, should be largely framed by the wishes of consumerswho, if allowed, would naturally use
only the best hospitals and doctors. The public, too, would prefer to stay healthy, rather than get
ill. Yet healthcare systems spend little on prevention (as the Engage Brussels participants had heard
earlier in the day). Patients now seek information about most aspects of their care. But only the best
healthcare systemssuch as the Dutchencourage that desire among patients.
c
a
s
e

s
t
u
d
y
on how to sustain
healthcare systems
32
Patients rights: how EU Member States can work together
Francesca Moccia, of the Rome-based civic group Cittadinanzattiva Onlus, talked to the Engage
Brussels meeting about an initiative run by Cittadinanzattivas international arm, Active Citizenship
Network (ACN) [http://www.activecitizenship.net], which is trying to promote the integration of
best practices thought the EU.
All of the countries in the European Union, despite differences in their national healthcare
systems, said Francesca Moccia, afford patients and public the right of access to healthcare. Often,
however, nancial constraints limit such access.
To ensure that patients and providers alike are aware of the extent of patients entitlements, ACN
drafted in 2002 a European Charter of Patients Rights, co-signed by 12 other civic groups from
across Europe. The 14 rights articulated in the Charter embody the position on fundamental rights
expressed by the EU and other recognised international agencies. ACNs 14 patients rights fall into
two categories:
1. Societal rights, which place an obligation on citizens to ensure that everybody is treated equally,
without discrimination. Included in this category are patients rights to access, information,
quality, safety, and innovation.
2. Individual patients rights (which are sometimes held as distinct from human rights) allow
patients to claim freedom of action within healthcare systems. This category holds rights to
prevention, consent, choice, privacy, time, complaint, avoidance of pain, personalised treatment,
and compensation.
More recently, and supported by European national groups, ACN has collected data to assess
whether EU countries have been showing consideration for the 14 patients rights. ACN found that
the rights least upheld by European healthcare systems are a patients right to respect for their time,
their right to free choice, and their right to access care.
ACN is now campaigning for the adoption of the European Charter of Patients Rights as a
common standard, and for it to function as a tool for the assessment of the quality and accessibility
of national healthcare services. The 2011 European Directive on the Application of Patients Rights
in Cross-Border Healthcare (mentioned earlier in the Engage Brussels meeting by Nick Fahy) is
seen by ACN as a step in the right direction. To follow on, though, patients need to understand
what is meant by rights, emphasised Francesca Moccia. They should be empowered through civic
groups, so that they can ensure that their rights to healthcare are implemented.
ACN is taking a prominent role in Europe to achieve these ambitions, and the organisation now
enjoys recognition from the European Union. In Italy, ACNs parent, Cittadinanzattiva, manages a
vast network of patient representatives, who attend every hospital in the country to listen to patients
and their complaints. Now ACN is setting up similar networks across Europe, so that patients
can learn about the Cross-Border Directive. Patients can then also provide feedback to ACN, and
monitor just how seriously different countries are taking the Directive. At the same time, further
ACN-backed campaigns and projects are underway across Europe to promote patients rights.
c
a
s
e

s
t
u
d
y
33
on how to sustain
healthcare systems
A tension evidently exists within governments and healthcare systems alike between the economic
imperative to cut costs in healthcare, and the moral duty to provide high-quality healthcare to all
citizens. Economists will see the curbing of healthcare spend as virtuous. But, in some countries,
scal austerity packages are slowly eroding the capability of healthcare systems to deliver high-
quality services. To strike the right balance between necessary thrift and patient safety, policymakers
need to consider the following:
How to liberate medical data, so that they ow easily within the healthcare system to all who
need access to that data (including patients and the public). Patientsonce informedwill be
more empowered and better able to take responsibility for more of their own care.
Making data transparent will permit the number crunching needed to enable policymakers to
determine whether health spend yields worthwhile returns. Transparency will also help identify
health and healthcare inequities. Transparency in pricing, for example, would go a long way
towards ending private discounts between medical suppliers and hospitals, and other distortions
and inefciencies in the healthcare market, making healthcare more effective.
Ensuring quality standards for information. Freeing up healthcare data and making them
more transparent will not, alone, though, be enough. Healthcare information in the public
domain may be of poor quality, or contradictory. Some sort of gold standard for healthcare
information needs to be developed, so that the public can see the difference between what is
erroneous and what is reliable.
Improving efciency in healthcare. Deciding how to make the best use of existing medical
resources would be another step in the right direction. For example, some medical technologies
at ground level in healthcare systems may not be utilised to best effect (a problem common in
the Greek healthcare system).
Granting doctors the right to use discretion when prescribing. Consensus in medicine is
an aspiration that may be difcult to attain when doctors come face to face with the personal
situation of individual patients. Standards therefore need to be exible enough to adapt to the
circumstances of different patients.
Developing new communities in healthcare innovation. The Engage Brussels session
on innovation emphasised the importance of including more communities in the medical
innovation process, to help generate new ideas, and to consider the pertinence of scientic
developments. The initial obstacle is convincing traditionalists within medical science that
patients and the public do have a stake in R&D. Once that obstacle is overcome, the next difcult
task will be the creation of tools to ensure fruitful community engagement (as Jacqueline
Bowman-Busato of EPPOSI described).
Conclusion: clarity of direction
on how to sustain
healthcare systems
34
Setting standards in conjunction with relevant stakeholders. Using tools like health
technology assessment (HTA), healthcare systems are constantly struggling to establish a
consensus of good practice throughout Europe. But such tools need to be formulated with the
input of more types of healthcare stakeholders (especially the ultimate consumers of healthcare
services, patients) than has been the case in the past.
Harnessing the power of e-health. The production of patient-friendly health apps and patient-
oriented telemedicine systems (such as the Robert Bosch Health Buddy) are potent examples of
how community involvement can enhance technologys usefulness, beget some cost savings, and
even bring about improvements in health outcomes. For the moment, the biggest difculty faced
by e-health manufacturers is convincing healthcare payers that the new contributions are worthy
of reimbursement. Few of the novel e-health applications are yet being bought for operation
within national healthcare systems.
Perhaps most important of all is ...
Developing mechanisms for cross-stakeholder consultation, so that people with disparate
views can work together to attain a consensus. Mention was made at Engage Brussels of models
such as the Bremen initiative. Launched by the German city of Bremen, the initiative is a
virtual community of people who try to encourage partnerships between business and political
leadersthe aim being to promote the concept of environmentally-sustainable cities.
Participants at the Engage Brussels meeting appeared to agree that the most vital consideration
in any healthcare reform package is that it be carried out in a considered way, with proper analysis
of the health outcomes of any proposed changewhich, in turn, presumes true engagement with
all healthcare stakeholders.
35
on how to sustain
healthcare systems
Session I
The nancial crisis in Europes healthcare systems
This session was chaired by Karen Taylor, Deloitte UK; former Senior Advisor, Marie Curie Cancer
Care; and former Director, National Audit Ofce (NAO)
Dening the tensions
Karen Taylor
Research Director, Deloitte UK; former Senior Advisor, Marie Curie Cancer Care; and former Director,
National Audit Ofce (NAO)
Public and private healthcare spending has been rising across Europe, with Greece, Portugal, and
Spain (some of the countries most badly affected by the nancial crisis) seeing the fastest increases.
Newly-acceded Member States, too, are likely to boost spending on healthcare, in reaction to
increases in national living standards. The challenges faced by these healthcare systems are:
A growing percentage of older people in the population, with all their associated high-cost, long-
term healthcare needs.
Unhealthy changes in lifestyle, associated with more people living under urban, less physically-
active, circumstances.
Increases in co-morbidity, with more people suffering from multiple chronic conditions.
An articulate, knowledgeable younger element within the population that is more demanding of
the services provided by healthcare systems than their ancestors ever were.
Accelerating pace of development of costly medical technology.
Continuous growth in the number of specialists.
Poor productivity among healthcare providers.
An over-emphasis on secondary, rather than primary, healthcare.
Not enough attention paid to the subjects of prevention and maintaining good health.
A lack of transparency, together with asymmetry of information between clinicians and citizens.
Too much bureaucracy (and, possibly also, too much of the wrong type of tick-box regulation).
Governments have responded by trying to better manage healthcare spend, and/or raise more
funds through taxes, insurance, or increased patient co-paymentswith little tangible results. In
the meantime, inequities evident in the provision of medical care seem to be growing. Public health
programmes that would be needed to halt the rise of lifestyle-related conditions require signicant
expenditure; but such spending is not occurring (in the UK, for example, only a mere 4% of
healthcare expenditure is directed at preventive measures). Information to inform patients and to
involve them in managing their own healthcare does exist, but, in practice, very little else is provided.
Patients do not always think that GPs act in their best interests any more, or fail to treat them as
equal partners in the task of nding the best health solutions for their personal situation.
The main challenge ahead will be increasing the productivity of healthcare; reducing expenditure
Appendix 1:
Summaries of the presentations at
Engage Brussels 2011
These summaries provide a short overview of the talks given at the Engage Brussels meeting.
on how to sustain
healthcare systems
36
in the hospital sector (and investing more, instead, in community care); changing the skill mix of
the workforce; improving the take up of the best medical technology; setting up more effective early
diagnostics; concentrating on supporting the older and more vulnerable members of society; and,
nally, increasing expenditure on prevention and self care.
Greek healthcare in the era of the European Financial Stability Facility (EFSF)
Kathi Apostolidis
Voluntary sector consultant and health commentator
The Greek national healthcare system, formed in 1983, faces the same cost pressure as the
healthcare systems in the rest of Europe.
Even before the nancial crisis, though, the Greek healthcare system was in trouble, struggling
under poor management and lack of accountability.
The Greek healthcare system is further burdened by endemic corruption, under-the-table
payments, overpricing, carelessness, and unwarranted variations in practice.
Healthcare providers are over-concentrated in large cities that host medical schools, leaving the
rest of the country with minimum or inadequate healthcare services.
The 2010 IMF/EU bail-out of the Greek economy ushered in a programme of massive cutbacks
to national spendingfrom which the Greek healthcare system was not immune.
The cuts imposed on the healthcare system by the Greek Treasury have been unilateral, and
instituted regardless of patient need.
Chief among the cuts were restrictions on hospital funding, and the rationing of prescription
medicines.
Hospitals have, as a result, been unable to pay many suppliers. They, in turn, are unwilling to
provide more goods until payment is made. Patients have therefore been deprived of some of the
treatments and services they used to receive.
Neither the Greek government nor any elements of the Greek healthcare system have begun
discussions with patients about these changes.
What happens to healthcare when a country is in crisis?
Stephen McMahon
Chairman, Irish Patients Association (IPA)
When speaking at the Council of Europes Medicrime Convention, Moscow, October 26th-28th
2011, Stephen McMahon warned that reform and change in our healthcare systems must not be
preceded by funerals and injury to patients.
The viewpoint that health reform has the possibility of endangering patient wellbeing became
the basis of his presentation at the Engage Brussels meeting.
Appendix 1:
Summaries of the presentations at Engage Brussels 2011
37
on how to sustain
healthcare systems
Patients have multiple needs, including the need to: be treated with dignity; have equitable
access to healthcare systems and supplies; receive high-quality care; feel secure that their safety
is paramount; have meaningful information; be engaged in their care; and be able to complain
when they feel that service has not been good enough.
Even before the nancial crisis, the Irish healthcare system (like the Greek healthcare system)
faced enormous challenges. One of the most serious of its failings was that its services could not
seem to keep up with demand.
Following the 2010 IMF/EU bailout of Irelands banks and public nances, the healthcare system
looked to be a prime target for cutbacks.
A leaked government memorandum in October 2011 indicated the scale of savings required
within Irelands healthcare system. Even the poorest people, it seemed, would be required to
contribute to their healthcare costs.
Such austere scal management carries great risks to patients.
Despite the concerns for its future, the Irish healthcare system has a good record of working well
with the patient community to devise better health services.
How do doctors remain gatekeepers in the face of informed patients? The doctors perspective
Birgit Beger
Secretary General, Standing Committee of European Doctors (CPME)
The Brussels-based CPME is the representative organisation of European doctors. The CPME
links national medical associations from 27 full-member countries, and from ve further
associate and observer countries. The organisations mission is to promote the highest standards
of medical practice and training, and to work towards ensuring that all citizens in Europe receive
the highest quality of healthcare.
The CPME supports efforts to inform patients. Informed patients are key to achieving optimal
results from treatment.
The CPME believes that doctors have a role to play in helping supply information to patients.
Patients should have the right to choose their treatment, underpinned by information which
must be objective, transparent, independent, and based on medical science.
Doctors need to possess the communicational skills required to be able to interact with their
patients.
Doctors also have to consider how their prescribing decisions economically impact upon the rest
of the healthcare system.
The CPME regards quality healthcare as a major human right, recognised and valued by the
European Union, its institutions and the citizens of Europe. Similarly, patients have a right to
expect that every effort is made to ensure their safety as users of health services, as laid out in the
Council of Europes 2005 Luxembourg Declaration.
Appendix 1:
on how to sustain
healthcare systems
38
Session II
Innovation
This session was chaired by Richard Bergstrm, Director General, EFPIA.
The Innovative Medicines Initiative (IMI)
Richard Bergstrm
Director General, EFPIA
The Innovative Medicines Initiative (IMI) was born in 2007 with two goals: make medical R&D
t the needs of society; and encourage more cross-stakeholder collaboration in the eld of
medical R&D (which had grown increasingly complex and cross-disciplinary).
Richard Bergstrm noted the importance of the rst goal: R&D should be much more than just
bringing people together to create innovations. If one just innovates without nding out what
the customer wants, then you have customers who will say We dont need this; its a waste of
money. Or innovation will be lacking in one critical sector, with too much emphasis on another
sector.
The IMI is Europes biggest public-private-partnership (PPP). Its fund of 2 billion is provided
jointly by the European Commission and members of EFPIA.
The IMI sets research priorities every year, and invites consortia to address them.
Twin priorities for 2012 are tackling antibiotic resistance and building a European databank of
chemical compounds and screening tools.
A exible and global approach to medical R&D is needed. The IMI proves that more than one
business model can be used to undertake medical R&D. Fruitful collaborations, in which risks
and benets are shared, can promise as much as the traditional patent-based incentives for
innovation.
The importance of innovation to healthcare systems
Jacqueline Bowman-Busato
Executive Director, EPPOSI
EPPOSI is an independent, not-for-prot, partnership-based and multi-stakeholder think tank
based in Brussels, Belgium. Members are drawn from patient organisations, academic science,
and industry.
EPPOSIs goal is to work at the cutting edge of European health policy_making, in four main
areas: the management of chronic conditions; health technology assessment (HTA); innovation
in healthcare; and rare diseases.
In the area of innovation, EPPOSI aims to identify ways in which a bottom-up, focused approach
(utilising the methodology of co-creation) can facilitate an innovation policy that will enable
new products and services to overcome some of the barriers that they currently face.
Appendix 1:
39
on how to sustain
healthcare systems
In March 2011, EPPOSI held a focus group to look at new technologies and new processes.
The focus group concluded that innovation has to provide patients with more support to
manage their own conditions. Without such interventions, considered the focus group,
healthcare systems will inevitably go bankrupt.
Co-creation is an important methodology whereby better products and services can be designed.
The approach allows patients and the community to be included throughout the innovation
process.
When every stakeholder is involved at an early stage, multidisciplinary patient-oriented solutions
are possible to achieve. The products emerging will be well-accepted before they reach the
market.
The next challenge is to educate stakeholders in developing the skills on how to listen, how to
keep personal agendas in check, and how go forward as a team.
Social media, smartphones and new methods of disseminating patient information
Skye Van Raalte-Herzog
CEO, Expanded Apps
One of the rst companies to enter the eld of educational health apps, Expanded Apps produces
educational apps, and partners with major scientic and technical publishing houses.
Expanded Apps aims to change the way medical information is communicated, transforming
plain educational material into entertaining, lively, animated videos, coupled with interactive
elements, all downloadable to mobile devices.
So competitive is the market that the prices the public pays for apps must be extremely low (the
public is used to getting content for free from iTunes).
Signicant effort has gone into ensuring the accuracy of Expanded Apps data through the input
of medical experts.
The next important breakthrough for health apps is likely to be a move beyond the provision of
mere information into interaction with (and between) users.
The phenomenal growth in sales of smartphones sparked off by Apples iPhone has increased
the opportunities to engage with communities, regardless of their geographic location or socio-
economic status.
Link to Expanded Apps: http://www.expandedapps.com / Focus Apps store: http://www.
focusappsstore.net.
Appendix 1:
on how to sustain
healthcare systems
40
How can IT help achieve sustainable healthcare?
Ileana Welte
Director, Robert Bosch Healthcare
Ileana Welte, a director at German-based Robert Bosch, talked about why and how her company,
better known for its manufacture of garden tools, car safety systems and washing machines, began
to look at the healthcare market in 2006.
The companys knowledge of, and closeness to, the consumer market meant that Bosch began
with a different starting point to that of more traditional medical science. The company started
by nding out what the public desired from healthcare services.
One signicant nding from among the Bosch research was that patients prefer to be at home
when they are ill, rather than in hospital.
Boschs telemedicine system, Health Buddy, helps to achieve this need by bringing patients into
regular contact with their physicians, enabling two-way communication, including transmission
of the patients biometric data.
Health Buddy is designed to be adapted to the needs of individual patients. It connects patients
and care providers on a regular basis, permitting tailored patient care to be offered.
This regular patient assessment helps to avoid the costs associated with admissions to accident
and emergency (A&E) departments, or inpatient hospital treatment.
Appendix 1:
41
on how to sustain
healthcare systems
Session III
Pan-European healthcare and patient organisations
This session was chaired by John Bowis, President, Health First Europe; and Vice-President, European
Health Forum Gastein.
What do patients want from Europe?
Alex Wyke
CEO, PatientView, and Business Director, Engage Health Alliance Europe
The patient movement has grown in importance as well as numbers. Patient groups are able to
address many of the complex needs of patients.
The patient movement has always used political advocacy to lobby governments for
improvements to the patient experience. In this time of scal austerity, lobbying has become
even more vital a task for patient groups that hope not to see healthcare services eroded.
The patient movement has been called an emancipation movement, akin to the feminist or black
movements (except, perhaps, that the patient movement still seems to be in its early stages).
The efforts of governments to control health ination have relied on the rationing of services, on
gate-keeping, and on performance-related pay_all without much success.
Policymakers are starting to believe that the solution to healthcares unending problemhow
to ensure the sustainability of healthcare systemslies with patients themselves, who need to be
given an increased sense of responsibility as healthcare stakeholders.
Such a move could bring multiple benets to patients and healthcare systems alike, including:
improved patient compliance; greater patient empowerment (and with that, fewer health
disparities); and greater self-care.
The mechanisms by which the views of patients are accommodated into decisions on health
cost-containment measures need to be denedand implemented.
Patients and the groups representing them need greater recognition of the fact that their views
are scientically valid, and that they can contribute to debates about cost-containment and
health policy.
The conicting challenges for EU patient organisations
Martin Lohr
Policy Ofcer, European Cancer Patients Coalition (ECPC)
The European Cancer Patient Coalition (ECPC) was founded in 2003 as the voice of the
European cancer patient community. The ECPC represents patient groups from across the full
spectrum of types of cancer.
The ECPC has 320 member organisations in 42 countries.
Appendix 1:
on how to sustain
healthcare systems
42
The ECPC faces many obstacles in its role as umbrella organisation, but heterogeneity of
membership is possibly the greatest. Language is a constant issue, along with the different
levels of knowledge of the politics of EU affairs among member groups. Not every member
organisation knows how the law applies. Some member groups do not understand the value
of their obligations, or do not respond to information passed on to them from the Coalition
headquarters.
To help all its members speak with one voice, the ECPC keeps them in contact with one another
by deploying e-communication tools.
The ECPC has developed advocacy tool kits for its members (for example, a new policy
handbook on the international rules of the 2011 European Directive on the Application of
Patients Rights in Cross-Border Healthcare).
Competition does exist with other patient organisations (even within the ECPC), which the
ECPC tries to resolve by networking with its peers.
The ECPC arranges meetings in different countries, discussing topics of common interest from
international and national perspectives.
The ECPC also runs workshops with other healthcare stakeholders, particularly doctors
organisations.
The Forum Against Cancer Europe (FACE) is an ECPC-managed informal international group,
with almost 90 MEPs as supporters.
Effectively working for patients across Europe
Nadine Stohler
President, European Kidney Patients Federation (CEAPIR)
CEAPIR was founded in 1981. Today, the group has 23 member organisations. The legal seat is in
Vienna; the working ofce is in Dublin; the President is Swiss.
CEAPIRs objectives are the promotion of the wellbeing of kidney patients, and the support of
their families. Campaigns include raising awareness of kidney disease and promotion of organ
transplantation and donation.
CEAPIR encourages co-operation among its members, and links with peer organisations,
including those run by healthcare professionals.
CEAPIR believe that patients should be informed, and have the freedom to choose their
treatments.
CEAPIR recognises the need for patients to self-care, but kidney conditions are complicated, and
kidney patients probably need to know more about their condition than do most other patients.
The medical world uses professional language when communicating with patients, but
uninformed patients may not be able to understand medical terminology. On the other hand,
informed patients could ask questions that specialists may be reluctant to answer.
Appendix 1:
43
on how to sustain
healthcare systems
Patients with kidney disease are therefore faced with difculties above and beyond those inicted
upon them by their illness.
Patient communication needs to improve.
A patients most fundamental right is to be able to enjoy lifeto still be a human being, not just
a patient.
Patient advocacy and industry
Sren Skovlund
Director, Global Patient Research, Advocacy and Support, Novo Nordisk
Industry needs to take a clear stance to support patients rights and the value of the patient
voice. The starting point is to understand the patients perspective, and be aware of issues of
importance to patients.
Industry has an advantage as it already engages will most of the main stakeholders in healthcare.
By driving stakeholder dialogue in the area of research, industry can help create sustainable
patient-centred models to support people with chronic illness. In this way, industry could
improve the patient experience.
Examples of such multi-stakeholder endeavours are already emerging. For example, in
September 2011, the United Nations held its rst-ever High-Level Meeting on Prevention and
the Control of Non-Communicable Diseases.
Another is the Innovative Medicines Initiative (IMI)s new European Patients Academy on
Therapeutic Innovation (EUPATI), which will be co-ordinated by the European Patients Forum
(EPF), along with 26 leading pan-European patient organisations, academic bodies, and not-for
prot organisations, and European Federation of Pharmaceutical Industries and Associations
(EFPIA) member companies.
Industry can facilitate comprehensive exploration of the needs of all healthcare stakeholders
across many countriesand help pinpoint the barriers that prevent patients from becoming
involved, or from reaching optimal health and quality-of-life outcomes.
The key is to develop better practices, and build up data to determine what is best practice (such
as establishing measurable indicators of patient centrednesswhether for industry, healthcare
organisations, or policy-makers).
Novo Nordisk is the driving force behind the largest global study of its kind, called DAWN 2
(Diabetes Attitudes Wishes and Needs)the aim of which is to bring new, 360-degree knowledge
and insights about the experiences and needs of people with diabetes, and all of the different
stakeholders that have a role in supporting them. The original DAWN study, carried out about a
decade ago, revealed major gaps between the needs of people with diabetes, and the availability
of psychosocial and educational support from healthcare and community settings. The DAWN-2
study will follow on from ten years of effort to address these gaps, revisiting progress made, and
setting the stage for new action.
Appendix 1:
on how to sustain
healthcare systems
44
Session IV
Cross-border healthcare
This session was chaired by Nick Fahy, Consultant, Nick Fahy Consulting, and former Head of the
Health Information Unit, DG Health and Consumers.
Working across borders for patient with rare diseases
Denis Costello
Web Communications Manager, European Organisation for Rare Diseases (EURORDIS)
Rare diseases, by denition, affect just one person in 2,000 or less.
Yet, across Europe, 6%-8% of the population are estimated to be aficted with a rare disease
which translates to the very large number of 29 million people.
EURORDIS is a pan-European organisation that brings together 502 member organisations in
46 countries. Together, these groups represent the interests of people with 4,000 different rare
diseases.
To integrate these disparate communities of patients more closely, EURORDIS and its US
partner, the National Organization for Rare Disorders (NORD), launched http://www.
rarediseasecommunities.org in April 2010.
The website is an online community for patients and health professionals, providing
information, peer support, and tools to help individuals with rare diseases manage their lives and
conditions.
The site overcomes language barriers by providing free translations.
The project aims to get to get rare disease constituencies to work in harmony. The key
requirement for the success of such a project will be the willingness of participants to see beyond
their immediate differences.
The project is nanced though a mix of public and private funding that adheres to a strict set of
guidelines.
Reforming healthcare systems
Johan Hjertqvist
President, Health Consumer Powerhouse (HCP)
Healthcare is a complex, confusing entity that stills suffers from data shortages, As a result, the
performance of national healthcare systems cannot be easily benchmarked.
Health Consumer Powerhouse has, however, created indices that assess healthcare services from a
patient perspective.
Appendix 1:
45
on how to sustain
healthcare systems
Launched in 2005, the Euro Health Consumer Index (EHCI) judges the ability of countries to
provide healthcare services that are consumer-oriented. The EHCI perspective is now generally
being seen as a robust and sustainable approach to measurement at EU level.
At a time when the EU is seeking to set minimum standards among health services across
Europe, consumers are increasingly exerting an inuence upon health reform. Consumers
increased mobility throughout Europe raises public awareness of the differing qualities of the
healthcare systems in Member States.
At present, the amount spent on healthcare by each country bears only limited correlation to the
efciency of the healthcare services supplied to that countrys consumers.
Traditional mechanisms used in parts of Europe to manage the demand upon healthcare systems
(mechanisms such as rationing and waiting lists) appear not to be curbing healthcare ination.
Countries have to consider how they can get the best value out of the money they spend on
healthcare. They therefore need to question some old cultural concepts and revisit the roles
played by some established healthcare organisations.
In short, a new way of looking at healthcare is called for. The consumer has to be allowed to help
frame future healthcare policy. Before that can happen, though, the consumer needs to be better
informed, and to be able to migrate to the best healthcare providers.
Patients rights: how EU Member States can work together
Francesca Moccia
Cittadinanzattiva Onlus
Active Citizenship Network (ACN) [http://www.activecitizenship.net], the international arm
of the Italian civic group, Cittadinanzattiva Onlus, is running initiatives in the area of patients
rights.
ACN, supported by 12 other civic groups from Europe, drafted a European Charter of Patients
Rights in 2002.
The Charters 14 rights embody the international position on fundamental rights expressed by
the EU and other recognised international agencies.
With the support of national civic groups from across Europe, ACN then collected data to assess
how far European countries are respecting the patients rights set out in the Charter.
ACN found that the patients rights least respected across Europe are the right to respect of
patients time, the right to free choice, and the right to access to care.
ACN is now campaigning for the European Charter of Patients Rights to be adopted as a
common standard and tool in the assessment of the quality and accessibility of health services.
The 2011 European Directive on the Application of Patients Rights in Cross-Border Healthcare
is seen by ACN as a step in the right direction.
Patients need to understand what is meant by patients rights, and be empowered though civic
groups to ensure that those rights are implemented.
Appendix 1:
on how to sustain
healthcare systems
46
ACN is taking a prominent role in Europe to achieve its ambitions. The organisation has gained
the recognition of the European Union.
ACN is setting up pan-European contact points to educate patients across Europe about the EU
Cross-Border Directive. Patients can then also provide feedback to ACN on just how far different
countries are taking the Directive seriously.
ACN is continuing to campaign on the subject of patients rights, and is running projects across
Europe to promote patient rights.
Appendix 1:
47
on how to sustain
healthcare systems
Abbott Laboratories
acumen public affairs
Amgen (Europe) GmbH
Baxter World Trade SPRL
Bayer Pharma AG
Biogen Idec
Bristol-Myers Squibb
Burson Marsteller
Cisco Systems, Inc
Cittadinanzattiva Onlus
Comite Permanent Des Medecins Europeens/Standing Committee of European Doctors (CPME)
CSC Angelini
Decision Resources
Digitas Health
Edelman
Eli Lilly & Co Ltd (Lilly UK)
Engage Health Alliance-Europe
EPPOSI
European Cancer Patient Coalition (ECPC)
European Commission
European Federation of Pharmaceutical Industries and Associations (EFPIA)
European Kidney Patients Federation (CEAPIR)
European Multiple Sclerosis Platform (EMSP)
Expanded Apps
Ferring Pharmaceuticals
FIPRA (Finsbury International Policy and Regulatory Advisers) International
Gamian-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe)
Health Consumer Powerhouse (HCP)
Irish Patients Association (IPA)
Janssen Pharmaceutica N.V.
Ketchum Pleon Belgium
Marie Curie Cancer Care
MSD
Neovoca Ltd
Novartis Pharma AG
Novartis Pharma NV-SA
Novo Nordisk
Ogilvy Healthworld
Orion Health
PatientView
Pzer
Pharma.be (Belgian Pharmaceutical Industry Association)
Pope Woodhead
Sano
Shire Belgium BVBA
St Jude Medical, Inc
UCB S.A.
Appendix 2:
Organisations that attended
Engage Brussels 2011
March 2012
Engage Health Alliance Europe Ltd
12 High Street
Stevenage
Hertfordshire
SG1 3EJ
UK

The Future of Healthcare in Europe

Transféré par

Informations du document

Copyright

Formats disponibles

Partager ce document

Partager ou intégrer le document

Options de partage

Avez-vous trouvé ce document utile ?

Ce contenu est-il inapproprié ?

Droits d'auteur :

Formats disponibles

The Future of Healthcare in Europe

Transféré par

Droits d'auteur :

Formats disponibles

The future of

The future prospects for Europes healthcare

Health apps have a tangible future as a tool for self-care

Europe needs a new interpretation of social solidarity,

How can one bring people together,

The gaps across Europe between

Vous aimerez peut-être aussi