# EUR-Lex - 52014DC0584 - EN

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# 52014DC0584

**REPORT FROM THE COMMISSION TO THE EUROPEAN PARLIAMENT, THE COUNCIL, THE EUROPEAN ECONOMIC AND SOCIAL COMMITTEE AND THE COMMITTEE OF THE REGIONS Implementation of the Communication from the Commission, from 24 June 2009, on Action Against Cancer: European Partnership [COM (2009) 291 final] and Second Implementation Report on the Council Recommendation of 2 December 2003 on cancer screening (2003/878/EC) /* COM/2014/0584 final */**

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EXECUTIVE SUMMARY

Cancer is a key public health concern across Member States and a central priority of EU health policy. In December 2003 the Council
adopted the Recommendation on cancer screening[1]. In
June 2009 the Commission adopted the Communication on Action Against Cancer:
European Partnership[2].
This report summarises the main achievements in the fight against cancer in
the EU in the framework of both initiatives towards the target to reduce cancer
incidence by 15% by 2020.

Ø Leadership: The vast majority of Member
States – 24 out of 28 - met the target of producing a National Cancer Control
Plan (NCCP) before 2013.

Ø Support to Member States: through a
Joint Action under the Health programme, guidance for Member States on
establishing national cancer plans and on cancer care has been developed. A new
Joint Action launched in 2014 will lead to a European
Guide on Quality Improvement in Comprehensive Cancer Control.  The Directive on the application of patients’ rights in
cross-border healthcare provides further opportunities
for increased cooperation through European Reference
Networks between healthcare providers and centres of expertise.

Ø Prevention: The fourth version of the European Code
Against Cancer supported by the European Commission through administrative agreements with the International Agency for
Research on Cancer will be launched soon.

Ø Screening: Based on current projections, well over
500 million screening examinations for breast, cervical and/or colorectal
cancer will have been performed in publicly mandated programmes in the EU
between 2010 and 2020.  European Guidelines for quality assurance in screening
and diagnosis have been produced for breast cancer (2006, supplements 2013),
cervical cancer (2008, second edition 2014) and colorectal cancer (2010).

Ø Quality
assurance: The Commission is developing a Quality Assurance
scheme for Breast Cancer Services based on the European legislative framework.

Ø Research: During the last seven years,
the EU has invested more than €1.4 billion in research efforts in relation to
cancer. More than half of this budget - €770 million – has been invested in
collaborative research projects to find new ways of fighting cancer and
supporting patients.

Ø Cancer information: In 2012, the European Commission's Joint
Research Centre was made responsible for coordinating the European Cancer
Information System and acting as repository of European Union data and tools.

Ø Coordination: To improve the
coordination of the range of cancer initiatives at EU level, the European
Commission has established a European Union Group of
Experts on Cancer Control in 2014.

1. PREFACE

1.1 Introduction

On 2 December 2003 the Council unanimously adopted the Recommendation
on cancer screening[3]
(hereafter the Council Recommendation)which acknowledges both the
significance of the burden of cancer and the evidence for effectiveness of
breast, cervical and colorectal cancer screening. The Recommendation calls on
Member States to take common action to implement national population-based
cancer screening programmes with appropriate quality assurance, in accordance
with European best practice guidelines. It further invites the European
Commission to report on the implementation of cancer screening programmes, to
consider the extent to which the proposed measures are working effectively, and
to consider the need for further action. In 2008 a first Implementation report
on the Recommendation[4]
was published, covering the period 2003-2007.

On 10 April 2008, the European Parliament adopted a resolution on
combating cancer in the enlarged EU, and Council conclusions on reducing the
European burden of cancer were adopted on 10 June 2008. On this basis, the
European Commission adopted on 24 June 2009 a Communication on Action
Against Cancer: European Partnership[5]
(hereafter the Commission Communication) to support the Member
States in their efforts to tackle cancer by providing a framework for
identifying and sharing information, capacity and expertise in cancer
prevention and control, and by engaging relevant stakeholders across the
European Union in a collective effort. According to point 3.1 of this
Communication, a report on the work undertaken will be submitted by the
Commission which will constitute a basis for determining future EU action on
cancer.

1.2 The burden of cancer in the European Union

There were just over 2.6 million estimated new cases of cancer
(excluding non-melanoma skin cancers) in the European Union (EU27) in 2012[6], 54% (1.4 million) occurring in men and 46% (1.2 million) in women.

The most common cancer sites were breast (364,000 estimated cases,
13.8% of all cancer cases), followed by prostate (359,000, 13.7%), colorectal
(342,000, 13.0%), and lung cancer (309,000, 11.8%). These four cancers
represented half (52.3%) of the estimated overall burden of cancer in the
European Union in 2012.

The most common primary sites in men according to 2012 estimates were
prostate (25.1% of the total), lung (211,000, 14.7%), colorectal (192,000,
13.4%) and bladder (96,000, 6.7%). In women, breast cancer was by far the most
frequently diagnosed neoplasm (364,000, 30.4% of the total), followed by
colorectal (151,000, 12.5%), lung (98,000, 8.2%) and uterus (64,000, 5.4%)
cancers.

The estimated total number of cancer related deaths in the European
Union (EU27) in 2012 was 1,263 million, of which 56% (708,000) in men and 44%
(555,000) in women. Lung cancer, with an estimated 310,000 deaths (24.5% of the
total) was the most frequent cause of death from cancer in Europe in 2012,
followed by colorectal cancer (150,000 deaths, 11.9%), breast cancer (91,000,
7.2%) and stomach cancer (58,000, 4.6%). Lung cancer continued to be the most
common cause of death from cancer in men (183,000, 25.9%) followed by
colorectal (82,000, 11.6%) and prostate (71,000, 10%) cancers. Breast cancer
was the leading cause of death in women (91,000, 16.3%), followed by colorectal
(68,000, 12.3%), lung (81,000, 14.7%) and ovary (30,000, 5.4%) cancers.

Cancer survival varies widely between European countries despite
major improvements in cancer diagnosis and treatment during the first decade of
the 21st century. The number of adults surviving for at least 5 years after
diagnosis has risen steadily over time in all the European Union, reflecting
major advances in cancer management such as organised cancer screening
programmes and improved treatments. However there continue to be big
disparities between countries, and international survival differences are
narrowing for only a few cancers such as breast, rectum, prostate, and melanoma
of the skin[7].

1.3 The cost of cancer in the European Union

It is estimated that cancer cost the EU Member States €126 billion
in 2009, with healthcare accounting for €51,0 billion (40%)[8]. Across the
EU, the healthcare costs of cancer were estimated at the equivalent to €102 per
citizen, but varied substantially from €16 per person in Bulgaria to €184 per person in Luxembourg.

Productivity losses due to early death were estimated to cost €42,6
billion and lost working days €9,43 billion. Informal care was estimated to
cost €23,2 billion. Lung cancer had the highest estimated economic cost (€18,8
billion, 15% of overall cancer costs), followed by breast cancer (€15,0
billion, 12%), colorectal cancer (€13,1 billion, 10%), and prostate cancer
(€8,43 billion, 7%). Researchers point out that these
estimates are conservative, as some categories of healthcare costs, such as screening
programmes, were not included due to the inability to obtain these data for all
countries under study.

2. RESULTS OF ACTION UNDER COUNCIL RECOMMENDATION AND COMMISSION
COMMUNICATION

2.1 National Cancer Control Programmes

Objectives for action: As a
horizontal action, the Commission Communication sets
the objective that by the end of the Partnership all Member States should have
integrated National Cancer Control Programmes (NCCPs). Putting such plans in
place should make a sustainable contribution to reducing the burden of cancer
in the EU towards achieving the target of a 15% reduction by 2020 (510,000
fewer new cases).

NCCPs are public health programmes designed to ensure the centrally
managed implementation and monitoring of evidence-based strategies for
prevention, early detection, diagnosis, treatment, rehabilitation, palliation
and research. In 2009, the European Commission reinforced its long-term
commitment to the fight against cancer by launching a European
Partnership for Action Against Cancer (EPAAC) Joint Action. The overall
aim of the EPAAC Joint Action (2009-2013) is to support Member States and other stakeholders in their efforts to tackle cancer more efficiently and as a
framework for identifying and sharing information, capacity and expertise in
cancer prevention and control, in order to achieve synergies and avoid
scattered actions and the duplication of efforts. The partnership involved a
wide range of stakeholders, all with specific experiences and expertise to
enrich the evidence base. It included medical and scientific research
institutions, industry representatives and non-governmental patient coalitions
from all EU.

Implemented actions: The majority of
Member States met the target of producing a NCCP before 2013. 24 of the 28 Member
States had some type of NCCP or programme or strategy by 2013. The remaining
four are underway for the finalisation of their respective NCCPs. The NCCPs
present significant variations in terms of scope, of the topics included in the
programme, the presence of indicators for their monitoring and/or evaluation,
the duration of the plan/programme/strategy, the period of preparation and the
involvement of patients.

EPAAC has provided three key deliverables useful for the further
development and quality improvement of NCCPs:

A report on the current state of NCCPs in the
  European Union[9]
 A Guide for the production of High Quality NCCPs in
  the European Union[10]
 Indicators for monitoring, evaluation and
  modification of NCCPs[11].

Significant efforts have been invested in all Member States to
produce NCCPs and they constitute a key element for a sustainable contribution
to reducing the burden of cancer in the EU because they mandate basic
structures needed for cancer control and create a mechanism for accountability.
They also represent a framework to introduce new guidelines, methods of care
and cooperation mechanisms, which is conducive to advances in cancer care
across the EU.

2.2 One third of cancers are preventable – the most cost-effective
response

Objectives for action: The Commission
Communication encourages the Partnership to adopt a
horizontal approach on the basis of tackling major health determinants as an
essential element to curb the increasing burden of cancer throughout the
European Union. Cancer is caused by many factors and therefore its prevention
shall address lifestyle, occupational and environmental causes. It has been
estimated[12]
that around one third of all cancers could be prevented by modifying or
avoiding key risk factors.  These factors include smoking, being overweight,
low fruit and vegetable intake, physical inactivity[13], alcohol consumption,
occupational exposure to chemical carcinogens and sun exposure.

A key element of the European response is the European Code
Against Cancer[14].
It passes across two clear messages:

certain cancers may be avoided – and health in
  general can be improved – by adopting healthier lifestyles; and
 cancers may be cured, or the prospects of cure
  greatly increased, if they are detected at an early stage.

Addressing the public at large in a citizen-friendly format, the
Code is a key communication tool in the prevention of cancer and should
constitute the major tool for disseminating preventive measures and
contributing to change the perception of cancer.

Implemented actions: Health promotion on the basis of major
health determinants has been a longstanding priority for the European
Commission, and has included strategies for nutrition, overweight and
obesity-related health issues[15],
and alcohol-related harm[16].
The Commission has developed an ambitious tobacco control policy[17]
aimed at discouraging children and young people from taking up smoking and at
harmonising the internal market of tobacco products, and at supporting national
efforts to protect citizens against exposure to second-hand smoke, taking into
account the need to tailor health promotion to specific population and target
groups.

In the occupational field, the evaluation of the EU Health and
Safety Strategy 2007-2012[18]
showed that it achieved relevant goals and identified the need to continue to
focus in prevention of occupational diseases, cancer being of major importance,
in the framework of coordinated actions with other EU Health and Environment
Strategies. For that purpose, the Commission has adopted a
new EU Strategic Framework on Health and Safety at Work 2014-2020[19].

Moreover, Directive 2004/37/EC of the European Parliament and of
the Council, of 29 April 2004, on the protection of workers from the risks
related to exposure to carcinogens or mutagens at work[20] sets out a
number of preventive measures to eliminate or minimise work-related exposures to
chemical carcinogens and mutagens. In addition, the list of substances
classified as carcinogens or mutagens is being updated in line with scientific
evidence in Part 3 of Annex VI to Regulation No 1272/2008 (CLP) on classification,
labelling and packaging of substances and mixtures[21].

More specifically the EPAAC Joint Action re-launched the European
Week Against Cancer[22]
to convey the health promotion messages from the European Code Against
Cancer.

The 4th edition of the European Code Against Cancer (first
version 1987, second version 1994, third version 2003), supported
by the European Commission through administrative
agreements with the International Agency for Research on Cancer (IARC), has
been initiated and work is ongoing.

2.3 Screening and early detection of cancers

Objectives for action: The Council Recommendation recommends
population-based screening for breast, cervical and colorectal cancers on the
basis of the available evidence of effectiveness, subject to implementation of
appropriate quality assurance systems. The WHO has endorsed in 2011 these
recommendations for its 53 Member States in the European Region[23].

Organized cervical cancer screening has been undertaken since 1963
in some Member States. Breast cancer screening programmes began to be
implemented in the late 1980s. Colorectal cancer screening programmes, however,
have only been established in the 2000s and still cover a small part of Europe.

According to the first implementation report on the Council
recommendation, the annual volume of screening
examinations in the EU at the time was considerable; however, this volume was
less than half of the minimum annual number of examinations that would be
expected if the screening tests specified in the Recommendation were available
to all EU citizens of appropriate age (approximately 125 million examinations
per year). Furthermore, less than half of the volume of examinations at the
time (41%) was performed in population-based programmes which provided the
organisational framework for implementing comprehensive quality assurance as
required by the Recommendation.

Implemented actions: Based on current projections, it has been a substantial improvement
in screening coverage in the EU in the last years. Over 500 million screening
examinations for breast, cervical and/or colorectal cancer will be performed in
publicly mandated programmes in the EU alone between 2010 and 2020.  The three
cancers covered by the Recommendation (breast, cervical and colorectal cancer)
account for almost one-fifth, or 400,000, of the 1.8 million cancer deaths in
the European Region (IARC 2008).

First data from the European health
interview survey (EHIS) Wave I[24] on breast, cervical and colorectal
cancer screening[25] were published in December
2010. According to this data[26] the percentage of women who
have ever undergone a mammography, aged between 50 and 69, among the countries
studied, France has the highest proportion (92.9 %), followed by Spain
(92.3 %), Austria and Germany (90 %), Belgium (89.5 %) and
Hungary (86.9 %); Bulgaria (19.5%) and Romania (13.5%) having the lowest.

The adoption of European guidelines on best practice
was identified in the Recommendation as the most important activity to
implement screening programmes in order to facilitate the further development
of best practice for high quality cancer screening programmes on a
national and, where appropriate, at regional level. Already in 2006, the 4th edition of the European Guidelines for
Quality Assurance in Breast Cancer Screening and Diagnosis[27] was produced. Since the
publication of the last implementation report, work on guidelines has continued
to be a priority:

In 2008 the European Commission in
  cooperation with IARC and the European Cervical
  Cancer Screening Network (ECCSN) produced the 2nd edition
  of the European Guidelines for
  Quality Assurance of Cervical Cancer Screening and Diagnosis[28]. These guidelines include
  extensive updates on technical details and documentation, as well as
  assessment of new technologies, e.g.: liquid-based cytology, automated
  interpretation of Pap smears and testing for human papillomaviruses. The
  scope of the guidelines has also been extended to include comprehensive
  instructions prepared by a multi-disciplinary team of experts for general
  practitioners, gynecologists and cytopathologists.
 In 2010 the European Commission in
  cooperation with IARC produced the First edition of the
  European Guidelines for Quality Assurance in Colorectal Cancer Screening
  and Diagnosis[29].
  The EU Guidelines on colorectal cancer screening aim to raise quality
  standards by providing guiding principles and evidence-based
  recommendations on quality assurance which should be followed when
  implementing colorectal screening programmes in the EU Member States. They
  cover the entire screening process - from invitation and organisation,
  through to diagnosis and management of lesions detected. They focus on
  elements essential to screening, but also include principles which
  are equally important in diagnosis: training, multidisciplinary
  teamwork, monitoring and evaluation, cost-effectiveness, minimising
  adverse effects, and timeliness of further investigations.

In 2013 the European Commission in
  cooperation with IARC, EUREF, the European Working Group on Breast Screening
  Pathology, and the Joint Action EPAAC published
  the Supplements to the 4th edition of the European Guidelines for
  Quality Assurance in Breast Cancer Screening and Diagnosis[30].
  The first
  supplement (Digital mammography update) responds to the rapid
  technological development that has accompanied a wide increase in the use
  of digital imaging in mammography screening and diagnosis since the fourth
  edition was published. The second supplement deals with several topics in
  the quality assurance of pathology in breast cancer screening and
  diagnosis in which problems and practical solutions as well as new
  techniques and other advances have emerged in recent years.
 In 2014 the European Commission in cooperation with IARC and the European Cervical Cancer Screening Network (ECCSN) intends to
  deliver the 2nd edition of the European Guidelines for
  Quality Assurance of Cervical Cancer Screening and Diagnosis ­– Supplements covering primary
  HPV testing in cervical cancer screening and organization of human
  papillomavirus (HPV) testing and conventional cytology in cervical cancer
  screening.

One of the objectives of the EPAAC Joint
Action was to establish an intensive comprehensive training course in
management of cancer screening programmes. For expert support in
designing and piloting the intensive training course, a network of European
Schools of Screening Management (ESSM) was initiated[31].

The EU Health Programme has also supported the AURORA project[32]
to identify a common and feasible strategy on how to promote Cervical Cancer
Screening in the new EU Member States targeting women 30-69 years old and
ensuring the coverage of hard to reach groups, assist the new EU Member States
in the implementation of evidence-based screening for cervical cancer and
promote a European exchange of information and expertise.

For the purpose of mapping cancer services delivering screening and
care across European countries, the European
Commission Joint Research Centre (JRC) launched a survey in 2012 on breast cancer services in European countries[33]. According to the results of this survey, 22 countries hold screening programmes for breast cancer, among which
21 are organised according to the definitions given in the guidelines. 15 out
of 25 countries hold screening programmes for colorectal cancer, and other four
are in a transition phase toward an organised programme. 19 out of 25 countries
hold screening programmes for cervical cancer and some are converting current non-systematic activities into a
population-based, quality assured programme.

2.4 Accreditation of breast cancer services in the European Union

Objectives for action: The Commission Communication states the
intention of the Commission to develop a voluntary European pilot accreditation
scheme for breast cancer screening and follow-up, building on the new European
guidelines in breast cancer screening and diagnosis (and their previous
editions as the most longstanding and developed guidelines in the area).

This follows the approach of the Recommendation to promote evidence-based cancer screening through a systematic
population-based approach with quality assurance. This was followed by Council
Conclusions on reducing the burden of cancer in 2008[34] inviting the
Commission to explore the potential for developing a European pilot
accreditation scheme for breast cancer screening and follow-up, based on the
European Quality Assurance guidelines.

Implemented actions: In December 2012, the JRC was
assigned with the following tasks:

To develop a new edition of the European Guidelines
  for Breast Cancer Screening and Diagnosis, and 
 To develop a quality assurance scheme for Breast
  Cancer Services based on the European legislative framework on
  accreditation as defined in the Regulation (EC) No 765/2008 of the European Parliament and of the Council of 9 July 2008
  setting out the requirements for accreditation and market surveillance
  relating to the marketing of products[35].

This project, which is still underway, is aimed
at establishing a minimum set of quality requirements for breast cancer
health-care across the EU based on a new edition
of the European Guidelines for Breast Cancer Screening and Diagnosis which should be available in 2016. In addition a European
Platform of Guidelines will be developed by JRC to host existing
guidelines for other stages of breast cancer care
beyond screening and diagnosis, covering treatment, rehabilitation, follow-up –
including surveillance and, where necessary, pain management, and aspects such
as psychological support and palliative care, which are essential for a
patient-centred concept of quality.

2.5 Applying best healthcare approaches in practice - identification
and dissemination of good practice

Objectives for action: The Communication foresees a reduction in inequalities
in cancer mortality by reducing the disparity between the best and worst
performing Member States in 70% by 2020[36].
This is supported by the development of guidelines for models of best practice
in cancer-related care, taking into account national, regional and local
contexts.

Implemented actions: The EPAAC has developed several initiatives in the area of health
care included producing a comprehensive picture of the cancer care landscape in
 Europe:

To identify best practices in European health services,
  promoting innovative network approaches to exchange experiences: a Policy statement on multidisciplinary cancer care[37]
  to define the core elements that all tumour-based multidisciplinary
  teams should include was developed. In addition, a computer-based
  symptom management and decision support system for symptom
  management within palliative care was established.
 To develop paediatric cancer care guidelines: The Joint Action worked closely with the European Society for
  Paediatric Oncology (SIOP) on the promotion of guidelines on improving
  paediatric oncology. Recently, a survey to Member States was carried out
  to evaluate the implementation of these guidelines using the results of a
  similar 2008 study by SIOP as a baseline measurement. The results of this
  comparison are expected in 2014.
 Evidence and use of complementary and
  alternative medicine in cancer: A survey of
  the European structures and centres providing complementary and
  alternative medicine within the framework of integrative oncology is
  ongoing.
 To develop, review and harmonise the content and
  implementation of clinical guidelines: Joint
  action partners focused on two areas in their work on developing clinical
  guidelines for cancer care: nutrition and rare cancers. On nutrition, the
  guidelines arising from the work on nutrition have been disseminated by
  the JRC to European cancer centres[38].
 To implement a training strategy to improve
  psychosocial and communication skills among health care providers: A number of partner organisations contributed to a mapping
  exercise on health system resources in psychosocial oncology care,
  communication skills among health care professionals and psycho-oncology
  training activities, as well as the existing gaps in need versus capacity.
  The results indicate that in 20 of the 26 countries that answered the
  survey, psychosocial oncology care is included in the NCCP, but only 10
  have a specific budget for it[39].

In order to give continuity to the efforts to improve cancer
control, especially in the field of healthcare, the Commission launched in 2014
a new three year Joint Action on cancer control,
funded from the Second EU Health Programme. Its main objective is to deliver a European
Guide on Quality Improvement in Comprehensive Cancer Control as well as a
Member States Platform, which will provide space for discussions on cancer
topics.

It is foreseen that the Guide and the position papers which will be
developed include both good practice and evidence-based recommendations, help
to foster quality improvement in cancer control and care at national levels and
to contribute to decreasing inequalities. The Guide is due to address the
topics of evidence-based and quality-based cancer screening programmes,
Comprehensive Cancer Network organisation, Community-based cancer care and
Survivorship. Member States will receive guidance on implementation of various
aspects of high-quality screening programmes in line with the European
guidelines for quality assurance in cervical, breast and colorectal cancer
screening and guidance on other potential screening programmes (e.g. lung,
prostate). Member States are to be provided with a model of a Comprehensive
Cancer Network, which they can subsequently adapt to their own contexts.

The Commission is also keen to support eHealth solutions in
particular through its eHealth Network and eHealth Action Plan, as eHealth has
the potential to deliver more personalised targeted, effective and efficient cancer
care and can help reduce errors. Such benefits have been demonstrated when
using telemedicine for managing disease as well as for health promotion. In another field of action on healthcare provision, the Commission
is exploring technical and financial solutions for the supply of medical
isotopes, following episodes of shortages in supply across Europe. Following
the Council Conclusions "Towards the Secure Supply of Radioisotopes for
Medical Use in the European Union" adopted on 6 December 2010[40],
a European Observatory was established to help to address issues concerning the
supply chain which directly impacts on healthcare needs.

2.6 Rare cancers

Objectives for action: The Communication stresses the need to tackle inequalities in
cancer mortality amenable to healthcare by reducing the disparity between the
best and worst performing Member States. The case of rare cancers is mentioned
as an area of EU added-value based on future cooperation on European Reference
Networks, for example in the field of rare diseases, which include many rare
cancers.

In principle, rare tumours should be defined the same way as rare
diseases. These are defined as those conditions whose prevalence is lower than
5 per 10,000 in the European population. Annually rare
cancer diagnoses represent about 22% of all cancers diagnosed. In contrast to
cancer in adults, virtually all the cancers in children are rare but severe.
Approximately 40,000 children are diagnosed with cancer every year in the EU. These
tumours pose special burdens on patients, requiring diagnostic and treatment
expertise that may not be readily available close to their residence. Patients
sometimes have to travel long distances to access appropriate pathologic
diagnosis and multidisciplinary treatment, and they have few options for a
second opinion.

Implemented actions: EU policy in the field of rare diseases seeks to help address the
challenges related to addressing rare tumours. This is
based on the 2008 Commission Communication on Rare Diseases: Europe’s challenges[41],
and the 2009 Council Recommendation on an
action in the field of rare diseases[42]. European
Union action in this field is aimed at improving patients' access to
appropriate and timely diagnoses, information and care. In this area, European
action can be more effective than Member States acting individually.

Moreover the Directive on the application
of patients’ rights in cross-border healthcare[43] clarifies patients' rights to
access safe and good quality treatment across EU borders, and be reimbursed for
it. It provides a basis for increased cooperation between national health
authorities through several actions. Some provisions are addressing rare
diseases. In particular Article 12 foresees enhanced
cooperation of Member States and gives the Commission the mandate to support
Member States in developing European Reference Networks (ERNs) between
healthcare providers and centres of expertise in EU countries for low
prevalence, complex or rare diseases.

Two Decisions[44]
[45]
adopted in March 2014 establish the criteria for the ERNs and its members as
well as the process to assess, evaluate and approve them. Only networks
approved according to these legal requirements will receive formal EU
recognition and will be awarded the EU ERN logo, a registered trademark owned
by the European Union.

Based on the EU rare diseases framework, the European Commission has
supported several initiatives under the Health Programme as follows:

In 2012, the
  project RARECARENET (Information Network on Rare Cancers)[46],
  which built upon some of previous activities of the Project RARECARE
  (Surveillance of Rare Cancers in Europe)[47] which
  provided estimations for incidence,
  survival, prevalence and mortality for all rare cancers. The project aims
  (i) to provide updated indicators of rare cancer
  burden, (ii) to collect and disseminate information on the health care
  pathways for rare cancers, (iii) to identify the criteria for centres of
  expertise for rare cancers, (iv) to produce and disseminate information on
  diagnosis and management of rare cancers, (v) to develop a clinical
  database on very rare cancers, (vi) to provide new knowledge on these
  diseases and their clinical management, and (vii) to develop and
  disseminate information for patients including a list of patients’
  associations dedicated to rare cancers.
 In 2013, the European Expert Paediatric Oncology Reference
  Network for Diagnostics and Treatment (ExPO-r-NeT), to support the
  provision of healthcare to children and young people with cancer in a
  Member State other than the Member State of affiliation, when the
  expertise with certain cancer conditions is rare and case volume low,
  contributing to provide cross-border best care to rare childhood cancer
  populations.

Moreover Rare Cancers Europe[48], a multi-stakeholder
initiative addressing specific challenges posed by rare cancers was formed.

2.7 Cooperation and coordination in cancer research

Objectives for action: The Commission Communication asks to develop a coordinated
approach to cancer research across the EU, aiming to achieve coordination of
one third of research from all funding sources by 2013.

Implemented actions: The EU plays a very
important role as cancer research funder. During the last seven years, through
its 7th Framework for Research (2007 – 2013), the Commission has
invested more than €1.4 billion in international collaborative research,
frontier research, mobility programmes, public-private partnerships and
coordination of national research efforts in relation to cancer. More than half
this budget - €770 million – has been used to encourage leading players from
across Europe and abroad to join forces in 'collaborative research projects',
to find new ways of fighting cancer and supporting patients. These projects are
helping to understand better how the various cancer types emerge, and how to
diagnose them earlier and treat them with more success.

Europe is one of the world's leading regions for
cancer research. Most of this research is funded and carried out within individual countries. To help coordinate and connect the
many and various national efforts, the EU funds initiatives such as the mapping
of national cancer funds via the TRANSCAN network[49];
optimises and links national and regional cancer registries via the EUROCOURSE
network[50];
and facilitates expert exchanges and helps transfer best practice from one
country to another.

Implemented Moreover, the EPAAC launched
work on cancer research with three specific objectives:

To identify and prioritise areas in cancer research
  that will benefit from coordination and cross-border collaboration;
 To identify mechanisms for a concerted approach for
  coordination of one third of cancer research from all funding sources by
  2013;
 To develop research coordination pilot projects in selected
  areas.

In this context, the following pilot projects were developed:
European cancer research coordination in early phase clinical research; a
European platform for cancer outcomes Research; and a European knowledge hub
for epidemiology and public health research on cancer: research coordination
and knowledge sharing.

It was clear from the start that no single methodology could be
applied for coordination of all areas of cancer research between all countries.
The challenge was thus to tailor coordination methodologies to specific
research topics and to the needs of interested parties, using consensual
principles for coordination.

2.8 Providing the comparable information necessary for policy and
action

Objectives for action: The Commission Communication asks to
ensure accurate and comparable data on cancer incidence, prevalence, morbidity,
cure, survival and mortality in the EU by 2013. To this
aim, the need is recognized for a European cancer information system (ECIS),
bringing together institutions and resources dealing with cancer information
and data to provide the knowledge necessary to optimize cancer control
activities. ECIS should coordinate and guide the entire process of data
collection, quality control, management, analysis, and diffusion.

In order to
improve comparability of epidemiological cancer data, two of the first projects
supported by the European Commission in the framework of the Europe Against
Cancer programme in 1987 were the establishment of the European Network of Cancer Registries (ENCR)[51] and the EUROCARE (Europe Cancer REgistry-based study on survival and care of cancer
patients)[52]. The ENCR promotes collaboration
between cancer registries, defines data collection standards, provides training
for cancer registry personnel and regularly disseminates information on incidence
and mortality from cancer in the European Union and the whole of Europe[53].

Dissemination of
cancer comparable information is also sustained by the European wide databases
of cancer as causes of death maintained by EUROSTAT[54], which is in
charge of collecting and homogenizing statistics on cancer mortality by age, sex, nationality and region; moreover, the ENCR data[55]
constitute a comprehensive system of information on the cancer burden in Europe
(mainly incidence and mortality), complemented by EUROCARE data for survival, prevalence and patterns of care.

Finally, and in
order to create a comparable system of cancer indicators,  the EUROCHIP
(European Cancer Health Indicators) Project[56] funded by the EU
Health Programme has developed indicators to monitor cancer. Within the EUROCOURSE
Project, the European Cancer Observatory (ECO) website was developed
as a centralized gateway for automated cancer registry data management and
dissemination. General health related data, necessary for an appropriate interpretation
of cancer indicators, are organized within the EU health websites[57].
General and health specific economic data are collected in the OECD health
database[58].
Finally, the European scientific community is in the forefront of
methodological research in population-based epidemiology and public health,
from analysis and projection of incidence and mortality trends, to survival
analysis, prevalence estimation, planning and conduction of high resolution
studies, and for the study of social and economic inequalities on health.

Implemented
actions: The EPAAC Joint Action prioritised three main
objectives to contribute to the development of the European Cancer Information
System:

To map the main sources of cancer data in Europe and to
  identify the priority topics to be supported by the Partnership;
 To unify under a common platform cancer burden indicators
  (incidence, mortality, survival and prevalence) provided by existing
  European activities;
 To create a Task force on population-based cancer cost
  investigation in Europe.

In 2009, the EPAAC Joint Action was mandated
to deliver, by 2013, a proposal laying the basis for a future European Cancer
Information System, in consensus with all cancer stakeholders (data providers,
health professionals, governments, citizens, patients and researchers).

In 2012, the JRC was made responsible for
assisting the discussion on an ECIS and acting as repository of European Union
data and tools. The report "Developing a
European Cancer Information System: a proposal from the European Partnership
for Action Against Cancer (EPAAC)"[59] which was
produced as an outcome of the EPAAC
serves as basis for the work of the Joint
Research Centre (JRC).

The Joint
Research Centre (JRC) will ensure the sustainability of ECIS and coordinate its
further development. It is working in close collaboration with all major
stakeholders in the cancer data domain, supporting the European Network of
Cancer Registries (ENCR) for which the JRC took over the Secretariat in 2012,
and collaborating with the International Agency for Research of Cancer (IARC)
and other scientific networks and projects at European level such as EUROCARE,
CONCORD (Global surveillance of cancer survival)[60], the Joint Action PARENT (Cross-border Patient Registries
Initiative)[61]
and other groups, to define the best effective options on all the major ECIS
functions, such as data quality control, statistical analysis, diffusion and
dissemination of cancer information, etc.

Today, more than 200 cancer registries are connected under the ENCR
in Europe. Data collection systems in the different countries reflect the
specific organisation of national health systems, and barriers persist in data
access, so it is difficult to move from the national to the European scale as
not all indicators are comparable across the EU. Registries presently provide
most epidemiological data on cancer, yet they are underfunded, mostly
understaffed, or launched without proper planning.

2.9 Working together in Partnership

Objectives for action: The Communication defines the role of the
European Commission to ensure the cooperative and action-oriented approach of
the Partnership, and to make certain that the proposed actions and activities
are appropriate for action at EU level.

Implemented actions: Joint actions are activities, under the Health Programme, carried
out by the European Union and Member States. For the
period of duration of the Partnership, the consultative structures of the EPAAC
Joint Action have permitted an extensive exchange of views and a constructive
cooperation between the European Commission and the Member States.

To increase the visibility and to improve the
coordination of the range of cancer initiatives at EU level, the European
Commission has established a European Commission Group
of Experts on Cancer Control[62].

This responds to demands from Member States and stakeholders for
improved coordination in the light of the expanding cancer work. In addition, sharing knowledge and information can help resolve
some of the difficulties that Member States are facing in cancer control and
will facilitate cooperation with relevant stakeholders.

3. CONCLUSIONS

EU action on
cancer based on the Commission Communication has strengthened
cooperation between the European Union, Member States and relevant stakeholders
and has created European added value in relevant areas (NCCP, screening, cancer
information system, rare cancers, etc.) as well as a practical basis to
continue and expand mechanisms for cooperation. This cooperation in strategic
areas has provided a framework which made a sustainable contribution to reduce
the burden of cancer in the EU and towards maintaining the target of a 15%
reduction by 2020. According to the last available data, in the period
2000-2010, the incidence of the most frequently occurring forms of cancers (i.e.
breast, lung, prostate and colorectal) decreased by about 10%.

In order to take
forward this cooperation, this Report has described some of the next steps:

Ø 
The 3rd EU Health Programme offers opportunities to promote public health action on cancer.

Ø 
Horizon 2020, in
particular its Health, demographic change and wellbeing objective, offers
opportunities to pursue research on cancer and other major chronic diseases.

Ø 
The Commission continues to support the
development of high quality National Cancer Plans in the European Union.

Ø 
There is a need to support the dissemination of the 4th edition of the
European Code Against Cancer as a key tool for the prevention and promotion
activities against cancer in the EU.

Ø 
It will be important to make the new Tobacco
Products Directive fully operational by ensuring full use of its delegated
and implementing powers as well as supporting its implementation by Member
States in order to reduce smoking throughout the EU and contributing to reduce
the incidence of cancer.

Ø There is a need to enhance cooperation between the fields
of Public Health, Environment and Occupational Health in order to tackle
the avoidable causes of cancer from a broader perspective.

Ø The Commission is supporting the new edition of the
European Guidelines for Breast Cancer Screening and Diagnosis, a European platform for high quality,
evidence-based breast cancer guidelines covering other stages and aspects
of care, and a voluntary European Quality Assurance scheme for Breast Cancer
Services.

Ø 
Having launched the Joint Action CANCON (European Guide on Quality Improvement in
Comprehensive Cancer Control), the main deliverable being the European
Guide on Quality Improvement in Comprehensive Cancer Control.

Ø 
Stakeholders should consider using the
Directive on the application of patients’ rights in cross-border healthcare for the creation of European Reference Networks, including on rare
tumours. The Commission intends to organise calls for Networks in 2014 and
2015.

Ø 
The situation of cancer screening has
clearly improved in the last years and especially since the adoption of the
Council Recommendation. However the European Commission services consider that
work in the area of implementation and updating of screening programmes and
networking between centres and experts, remains as a priority public health
objective, at the EU, national and regional level, in the coming years.

Ø 
In addition, in order to support an equal
treatment for patients suffering from rare tumours, there would be added value
in considering a specific Action on Rare Cancers.

Ø 
It will be important to develop the European
cancer information system (ECIS), to provide the knowledge necessary to
optimize cancer control activities.

Ø 
The Commission is developing a coordinated approach
to cancer research activities across the EU.

Ø 
There is a need for wider uptake of eHealth for efficient disease management and
to strengthen effective prevention practices.

The recommendations of Members States and stakeholders, in the
framework of the European Commission Group of Experts on Cancer Control,
will also be taken into account.

The European Commission maintains, as stated in the Communication the objective to reduce the burden of cancer in the
EU, and that the target of a 15% reduction of cancer incidence by 2020 (510,000
new cases) is an achievable result.

[1]
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2003:327:0034:0038:EN:PDF

[2]
http://ec.europa.eu/health/ph_information/dissemination/diseases/docs/com_2009_291.en.pdf

[3] http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2003:327:0034:0038:EN:PDF

[4]
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2008:0882:FIN:EN:PDF

[5]
http://ec.europa.eu/health/ph_information/dissemination/diseases/docs/com_2009_291.en.pdf

[6] Cancer incidence and mortality patterns in Europe: Estimates for 40
countries in 2012, European Journal on Cancer, February 2013.

[7] http://press.thelancet.com/EUROCARE1.pdf

[8] Economic burden of cancer across the European Union: a
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14, Issue 12, Pages 1165 - 1174, November 2013

[9]
http://www.epaac.eu/from_heidi_wiki/Final_Report_on_National_Cancer_Control_Programmes.pdf

[10]http://www.epaac.eu/images/END/Final_Deliverables/WP_10_Annex_17_European_Guide_on_Quality_National_Cancer_Control_Programmes.pdf

[11] http://www.epaac.eu/from_heidi_wiki/Final_Report_on_National_Cancer_Control_Programmes.pdf

[12] http://www.who.int/cancer/prevention/en/

[13] This objective
would converge with the EU policy objectives defined in the Council
Recommendation of 26 November 2013 on promoting health-enhancing physical
activity across sectors, OJ C 354, 4.12.2013, pp. 1-5.

[14] http://www.cancercode.eu/

[15] http://ec.europa.eu/health/nutrition_physical_activity/policy/strategy_en.htm

[16] http://eur-lex.europa.eu/LexUriServ/site/en/com/2006/com2006_0625en01.pdf

[17] http://ec.europa.eu/health/tobacco/introduction/index_en.htm

[18] http://ec.europa.eu/social/BlobServlet?docId=10965&langId=en

[19]
http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:52014DC0332

[20]
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=CELEX:32004L0037:en:NOT

[21]
http://eur-lex.europa.eu/legal-content/EN/ALL/?uri=OJ:L:2008:353:TOC

[22]
http://www.europeancancerleagues.org/ewac/european-week-against-cancer-2013.html

[23]
http://www.euro.who.int/en/health-topics/noncommunicable-diseases/cancer/policy/screening-and-early-detection

[24] EHIS wave 2 is
being conducted in all EU Member States between 2013 and 2015 under Commission
Regulation (EU) No 141/2013:
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2013:047:0020:0048:EN:PDF.

[25] http://appsso.eurostat.ec.europa.eu/nui/show.do?dataset=hlth_ehis_hc2&lang=en

http://appsso.eurostat.ec.europa.eu/nui/show.do?dataset=hlth_ehis_hc3&lang=en

http://appsso.eurostat.ec.europa.eu/nui/show.do?dataset=hlth_ehis_hc4&lang=en

[26]
http://epp.eurostat.ec.europa.eu/statistics_explained/index.php/Breast_cancer_screening_statistics

[27] http://ec.europa.eu/health/archive/ph_projects/2002/cancer/fp_cancer_2002_ext_guid_01.pdf

[28]http://bookshop.europa.eu/is-bin/INTERSHOP.enfinity/WFS/EU-Bookshop-Site/en_GB/-/EUR/ViewPublication-Start?PublicationKey=ND7007117

[29]
http://bookshop.europa.eu/is-bin/INTERSHOP.enfinity/WFS/EU-Bookshop-Site/en_GB/-/EUR/ViewPublication-Start?PublicationKey=ND3210390

[30]
http://bookshop.europa.eu/en/european-guidelines-for-quality-assurance-in-breast-cancer-screening-and-diagnosis-pbND0213386/

[31] http://www.epaac.eu/from_heidi_wiki/ESSM_firstannouncement0619.pdf

[32]
http://www.aurora-project.eu/en/web/cervical-cancer-screening-608

[33] http://bookshop.europa.eu/en/report-of-a-european-survey-on-the-organisation-of-breast-cancer-care-services-pbLBNA26593

[34] http://www.eu2008.si/en/News_and_Documents/Council_Conclusions/June/0609_EPSCO-cancer.pdf

[35] http://eur-lex.europa.eu/Notice.do?val=477184:cs&lang=en&list=511806:cs,480690:cs,477184:cs,&pos=3&page=1&nbl=3&pgs=10&hwords=

[36] http://www.oecd.org/health/cancer-care.htm

[37] http://www.ejcancer.com/article/S0959-8049(13)01007-1/abstract

[38] https://ec.europa.eu/jrc/en/news/making-diet-count-cancer-prevention

[39] http://www.epaac.eu/healthcare

[40]
http://ec.europa.eu/energy/nuclear/radiation_protection/medical/doc/2012_council_radioisotopes.pdf

[41]
http://ec.europa.eu/health/ph_threats/non_com/docs/rare_com_en.pdf

[42]
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF

[43]
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:088:0045:0065:en:PDF

[44] http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=OJ:JOL_2014_147_R_0006

[45]
http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=OJ:JOL_2014_147_R_0007

[46] http://www.rarecarenet.eu/rarecarenet/

[47] http://www.rarecare.eu/aims/aims.asp

[48] http://www.rarecancerseurope.org/

[49] http://www.transcanfp7.eu/transcan/index.php

[50] http://www.eurocourse.org/

[51] http://www.encr.eu/

[52] http://www.eurocare.it/

[53]
http://unstats.un.org/unsd/methods/m49/m49regin.htm#europe

[54] Eurostat data
collection on causes of death is now conducted under the Commission Regulation
(EU) No 328/2011:
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:090:0022:0024:EN:PDF.

[55] http://eco.iarc.fr/Default.aspx

[56] http://www.tumori.net/eurochip/

[57] http://epp.eurostat.ec.europa.eu/portal/page/portal/health/introduction

[58]
http://www.oecd.org/health/health-systems/oecdhealthdata.htm

[59]
http://www.epaac.eu/cancer-data-and-information

[60]
http://www.lshtm.ac.uk/eph/ncde/cancersurvival/research/concord/concord_2.html

[61] http://www.patientregistries.eu/

[62] http:// Commission Decision 2014 C/167 05, of 3 June
2014, ec.europa.eu/health/major_chronic_diseases/docs/com2014_c167_05_en.pdf