Boosting Innovation and Cooperation in European Cancer Control Key Findings from the European Partnership for Action Against Cancer Edited by Jose M. Martin-Moreno Tit Albreht Sandra Radoš Krnel Boosting Innovation and Cooperation in European Cancer Control Boosting Innovation and Cooperation in European Cancer Control Key findings from the European Partnership for Action Against Cancer Edited by Jose M. Martin-Moreno, Tit Albreht, Sandra Radoš Krnel Keywords: Cancer Cancer and its Control Capacity building Health promotion International cooperation Primary prevention Secondary prevention Boosting innovation and cooperation in European cancer control: key findings from the European Partnership for Action Against Cancer Editors: Jose M. Martin-Moreno, Tit Albreht, Sandra Radoš Krnel Reviewers: Michel P Coleman and Martin McKee Publishers: National Institute of Public Health of the Republic of Slovenia Trubarjeva 2, 1000 Ljubljana, Slovenia E-mail: [email protected] Tel. +386 1 2441 400 www.ivz.si and World Health Organization on behalf of the European Observatory on Health Systems and Policies Rue de l’Autonomie 4, B-1070 Brussels, Belgium E-mail: [email protected] Tel. +32 2 525 0935 www.europeanobservatory.eu Ljubljana, 2013 ISBN 978-961-6911-22-1 First published 2013 Typesetting by Peter Powell e-publication: www.epaac.eu and http://www.euro.who.int/en/who-we-are/partners/observatory/studies Copyright © National Institute of Public Health of the Republic of Slovenia This publication arises from the European Partnership for Action Against Cancer, which has received funding from the European Union through the Executive Agency for Health and Consumers of the European Commission, in the framework of the Health Programme 2008–2013. The European Commission is not responsible for the content of this publication. The sole responsibility for the publication lies with the authors, and the Executive Agency is not responsible for any use that may be made of the information contained herein. CIP - Cataloguing in Publication National and University Library, Ljubljana, Slovenia 616-006-084(4)(082) BOOSTING innovation and cooperation in European cancer control [Elektronski vir]: key findings from the European partnership for action against cancer / editors Jose M. Martin-Moreno, Tit Albreht, Sandra Radoš Krnel. - El. knjiga. - Ljubljana : National Institute of Public Health of the Republic of Slovenia ; Brussels : World Health Organization on behalf of the European Observatory on Health Systems and Policies, 2013 ISBN 978-961-6911-22-1 (National Institute of Public Health of the Republic of Slovenia, pdf) 1. Martin-Moreno, Jose M 268665600 Contents List of tables, figures and boxes vii Abbreviations xi Foreword John F. Ryan xv Preface Marija Magajne xvii Acknowledgements xxi Introduction to the present volume Jose M. Martin-Moreno, Meggan Harris, Tit Albreht 1 Chapter 1: Joint Action European Partnership for Action Against Cancer - EPAAC Sandra Radoš Krnel, Tit Albreht, Jose M. Martin-Moreno 9 Chapter 2: Rejuvenating the European Week Against Cancer: Working together to spread the word, ‘Cancer is preventable!’ Wendy Yared, Kevin O’Hagan, Sabrina Paladini, Pavel Poc, Alojz Peterle, Matic Meglic,ˇ Tina Lipušcek,ˇ Ana Šinkovec 35 Chapter 3: Online social media as a tool to improve cancer prevention and health promotion Matic Meglic,ˇ Aleš Lamut, Ana Šinkovec, Wendy Yared 57 Chapter 4: Building European capacity and expertise in secondary cancer prevention: towards a common core curriculum for cancer screening Ahti Anttila, Stephen P. Halloran, Florian A. Nicula, Alban Ylli, Nereo Segnan, David Ritchie, Dolores Salas Trejo, Ana Molina-Barceló, Marlou Bijlsma, Lawrence von Karsa 87 Chapter 5: More than a European sound box: capitalising on the added value of the European perspective in cancer treatment Josep M Borras, Joan Prades, Jeanne-Marie Brechot, Sara Faithfull, Annalisa Trama, Paolo G. Casali 117 Chapter 6: Information for action: building a unified European Cancer Information System to bolster cancer control Milena Sant, Riccardo Capocaccia, David Forman, Stefano Rosso, Annalisa Trama, Sabine Siesling, Renée Otter, Camilla Amati, Francesco De Lorenzo 141 Chapter 7: Towards innovative models to improve cancer research coordination and outcomes in Europe Julio E. Celis, Anna Rouillard, Ingrid van den Neucker, Maria Ferrantini, Silvia Paradisi, Carlos Segovia, Teresa Corral, Rosana Peiró, Dolores Salas, Christine Berling, Fabien Calvo, Agnès Buzyn 179 Chapter 8: From ‘on paper’ to ‘into action’: development of National Cancer Control Programmes in the EU Tit Albreht, Marjetka Jelenc, Lydia Gorgojo 209 Chapter 9: Summary and conclusions: the European Partnership for Action Against Cancer . Just the beginning Jose M. Martin-Moreno, Tit Albreht, Sandra Radoš Krnel 243 Index 265 List of tables, figures and boxes Tables Table 3.1 SWOT overview of EPAAC Online Social Gaming 79 Table 4.1 ESSM pilot course 19–23 November 2012 and 11–15 March 2013, delegates 95 Table 4.2 ESSM pilot course 19–23 November 2012 and 11–15 March 2013, faculty 96 Table 4.3 ESSM pilot course, abridged curriculum 97 Table 5.1 List of EPAAC associated and collaborating partners in health care 119 Table 6.1 Science- and policy-related hurdles to an ECIS 150 Table 6.2 EUROCHIP cancer indicators 152 Table 6.3 Agreed conclusions adopted by EUROCARE and IARC on common dissemination of cancer burden indicators 167 Table 6.4a–d ECIS organisational options and considerations, by function 170 Table 6.4a Database management 170 Table 6.4b Data quality control 171 Table 6.4c Data analysis 172 Table 6.4d Individual data dissemination 173 Table 7.1 Priority areas for cancer research coordination 184 Table 8.1 General elements of NCCPs 218 Table 8.2 Structures for implementation and accountability in NCCPs 221 Table 8.3 Challenges in NCCP development and Member State responses 223 Table 8.4 Evaluation processes and indicators for NCCPs 227 Figures Figure 2.1 Winning entry from the 2012 youth poster competition, by Claudio Pavione of Italy 46 Figure 2.2 Homepage of the CancerCode website as it appeared on 9 October 2011, in its original unchanged form, created during the previous EU-funded Europe Against Cancer programme ‘Last update July 2, 2003’. 47 viii Boosting Innovation and Cooperation in European Cancer Control Figure 3.1 Value chain for online social media campaign 66 Figure 3.2 I’m a Fan of Life Facebook landing page 69 Figure 3.3 Example of a game: Solve the rebus 70 Figure 3.4 Diachronic evolution of Facebook ‘likes’ from 1 Jan 2013 to 21 March 2013 (N=166 ‘likes’) 74 Figure 3.5 Diachronic evolution of Facebook ‘likes’ from 22 March 2013 to 22 June 2013 (N=16828 ‘likes’) 75 Figure 3.6 Sources of Facebook ‘likes’ in the period from 22 March 2013 to 22 June 2013 76 Figure 3.7 Demographics of EPAAC Facebook reach, 22 March 2013 to 22 June 2013 77 Figure 3.8 Facebook indicators on engagement and viral reach, 22 March 2013 to 22 June 2013 78 Figure 4.1 ESSM course Module 1 participants 90 Figure 4.2 Process of cancer screening 92 Figure 4.3 Evaluation of Module 2 of ESSM course by participating delegates 99 Figure 5.1 Age standardised five-year relative survival estimates for colorectal cancer in selected European countries, 1995–99 120 Figure 5.2 Age standardised five-year relative survival estimates for breast cancer in selected European countries, 1995–99 121 Figure 5.3 Network approaches by level of integration 126 Figure 6.1 Organigram of the European Network of Cancer Registries 155 Figure 6.2 CR coverage in EU and EEA/EFTA countries in 2007 and 2013 156 Figure 6.3 Adult and childhood cancer coverage participating in EUROCARE-5 160 Figure 8.1 Health system functions and goals 213 Figure 8.2 European NCCPs implemented before and after European Commission Communication on Action Against Cancer 217 Figure 8.3 EPAAC working structure on NCCPs 237 Boxes Box 1.1 Associated and Collaborating Partners of the Health Promotion 13 and Prevention Advisory Council Box 1.2 Priorities for improving cancer care, Lisbon round table for better cancer care 20 Box 1.3 Pan-European actors in cancer information 27 Box 2.1 Steps to planning a smart flash mob 42 Box 2.2 Case study: Promotion of the European Code Against Cancer Poster Competition in Slovenia 45 Box 2.3 Case study: Raising prevention awareness at the National Level in the Czech Republic 49 Box 4.1 European Schools of Screening Management (ESSM) network, senior management team 91 List of tables, figures and boxes ix Box 5.1 The Lombardy Cancer Network (ROL) 127 Box 5.2 The Catalonian Institute of Oncology Network (ICO) 128 Box 6.1 Definition of cancer information system 143 Box 6.2 Addressing policy-related obstacles to an ECIS 151 Box 6.3 Spotlight on cancer registries in Greece, Luxembourg and Bulgaria 158 Box 6.4 Overview of Cancer Registration in Europe questionnaire 159 Box 7.1 The cancer research funding landscape in 18 EU Member States 187 Box 7.2 Guiding principles for European coordination of cancer research 188 Box 7.3 INCa’s national programme for early-phase therapeutic cancer research/ CLIP² programme 191 Abbreviations AC Associated Countries (plural AC) ACC Alliance Against Cancer (Italy) AIM International Association of Mutual Benefit Societies ANCR Association of Nordic Cancer Registries BMI Body mass index BSE Breast self-examination CBE Clinical breast examination CCC Comprehensive Cancer Centres CDM Central data management CEN European Committee for Standardisation CI5 Cancer Incidence in Five Continents CIBER