Nothing About Us Without Us!
Brussels, The Square
Conference Book ECPC Cancer Summit Making the Cancer Partnership work Acknowledgements
The ECPC Cancer Summit arises from the project “ECPC Cancer Summit: Making the Cancer Partnership work” which has received funding from the European Union, in the framework of the Public Health Programme. The following additional sponsors are supporting the ECPC Cancer Summit with an unrestricted grant:
Bristol-Myers Squibb, Eli Lilly, Novartis, Pfizer, Roche and Sanofi Pasteur MSD
The funding enables ECPC e.g. to provide travel bursaries to patient groups from across Europe to attend the ECPC Cancer Summit. Dear Participants,
Cancer causes great suffering. Cancer destroys lives and families across the continent.
I have met cancer patients on various occasions and I am inspired by their courage and determination in fighting this terrible disease.
It is through our unwavering commitment and determination that we can help them in their long and painful fight against the disease. Each of us can make a meaningful contribution. Each of us has a role to play: health professionals, policy makers, administrations, civil society and industry.
This is what the European Partnership for Action against Cancer is about. The Partnership provides us the right framework to work together.
Our action does not end here.
For many cancer patients, the treatment they need can be better provided - or is only available - across borders in another European country. The new legislation on cross border healthcare, once adopted, would enable patients to access safe and good quality healthcare all over Europe, and to be reimbursed for it.
The new law would also enable enhanced cooperation at the European level on European reference networks for example for rare cancers, so that patients could access the best possible expertise and treatment for their case.
I am committed to supporting action against cancer and would like to thank the European Cancer Patient Coalition for bringing us together to discuss how to make our partnership for action against cancer work.
John Dalli, Commissioner for Health and Consumer Policy
- 2 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Dear Delegates,
I’d like to welcome you to our ECPC Cancer Summit at the Square. This magnificent building and its gardens has been restored and updated into a fantastic venue for this our fifth annual meeting. When you join us for our reception and dinner later you will be able to see some stupendous views over the city from the top floor.
This year our conference theme is “Making the Cancer Partnership Work” which is much more policy focused than the more workshop oriented approach we have had over the last four years in our Masterclass series of conferences.
Why is this? Two reasons. Firstly its a tribute to you and the way member groups have grown in capacity and capability over the last few years. You are more organized, sophisticated and knowledgeable than ever. When you represent your memberships you can add real weight to their voices and enable them to be heard locally and nationally.
Secondly the EU Cancer Partnership will be officially launched next Spring after being announced in September last year. This EU 27 wide initiative has a core objective of the sharing of cancer healthcare resources more effectively and efficiently. The aim is to avoid duplication and ensure coordinated delivery of services across the entire spectrum of institutions and professions involved in research and the provision of care.
The slogan “from bench to bedside” neatly sums up the range of focus and the programme carries a clear deliverable of reducing the number of new cancer cases by 15% by 2010.
Patient organizations have a key role to play here both locally, regionally, nationally and at the pan european level. We have made sure we have representation in several key areas of the programme so that we can safeguard patients interests and give a voice to your concerns.
We have dramatically increased the size of our Brussels office to ensure we have the resources to allow us to fulfill our representative commitments. We also intend to continue to build up our Forum Against Cancer Europe group of MEPs who now number over seventy so that we can ensure your interests are heard in the European Parliament in addition to the Commission.
You will be hearing from both MEPs and Commission staff over the next two days and I can assure you they will listen carefully to your informed, expert comments about cancer issues passed on to you by your memberships.
Finally let me thank the Commission for the very generous grant they have made to us to enable us to host this year’s event and a special thank you to Commissioner Dalli, his service and also to DG Research for the warm support that they have responded to the concerns of the cancer patient community.
Tom Hudson, ECPC President
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 3 - Dear Friends,
Many of you know what it means to face the diagnosis of cancer. You know what it means to fight it. But you should not have to be alone in your battle. The European Partnership for Action Against Cancer is a unique effort at European level to combat cancer by bringing together a broad range of warriors committed to saving lives and helping those who suffer. Health professionals, health authorities, civil society organisations, policy makers, experts and many others are ready to commit and work together to achieve the goal of saving half a million lives by 2020. The experience of cancer patients and survivors is important in this joint effort. There are still significant differences in new cancer cases and deaths from cancer across Europe. I am convinced that by working together at European level, we can make a positive difference in this respect. This comprehensive approach to tackling cancer includes several key areas, namely health promotion and cancer prevention, early diagnosis and screening, healthcare, research and health information and data. The European Partnership will enable the exchange of knowledge and best practices, as well as cooperation and the implementation of actions in all of these areas. I hope that the Cancer Patient Summit will contribute to making the partnership work. The role of each of you can be significant in achieving this, not only at European level, but also in your countries, regions, cities. Together, we can achieve more.
Paola Testori-Coggi, Director-General for Health and Consumers
- 4 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Dear Delegates,
The 2010 ECPC Cancer Summit ‘Making the Cancer Partnership Work’ focus is on keeping the “patient at the centre” and with this aim will bring together as equal partners patient organisations, clinicians, researchers, MEP’s, commissioners and, in particular, the Commissioner for Health John Dalli. The aim of the summit is to create a platform for ongoing discussions between all relevant stakeholders in addition to the dissemination of information about the plans for action coming out of the European Cancer Partnership.
I am especially proud that this year ECPC gives special attention to the ever growing problem of rare and less common cancers. At last the challenges surrounding access to appropriate and effective care and therapy with rare and less common cancers will be in the spotlight. This, it must be said, is a rarity in itself. Owing to smaller patient populations, we are often the poor relation when it comes to our voice being heard. However the increasing understanding of how the cancer cell develops we will eventually see that even the commonest of cancers will be divided and sub- divided into smaller patient populations.
While prevention and screening initiatives are welcomed and supported by ECPC, we are mindful that we also need to take an increasingly different approach when talking about the rare cancers which inhabit an area where such initiatives are not relevant and are of little help. Rather we need not only to discuss the ways in which we can improve access to appropriate and effective treatment and care but also how we can encourage a real commitment to collaborative research programmes by investing in European Networks of Reference. These provide a strong platform for translational research, in other words, research that is transformed from theory and lab based work into effective cancer therapy that saves lives. An approach often named as ‘from bench to bedside’.
ECPC’s Rare Cancer Action Group regards as essential actions on collaborative research programmes, centres of expertise and cross border health care and ongoing medical education of health care professionals, especially in the primary care area when timely and correct diagnosis is of crucial importance to the survival of patients with rarer cancers. We particularly support the acceptance by professional and regulatory bodies that patients, through their representatives in the rare cancer community, are involved in the design of clinical trials which have as a feature greater flexibility and a more rational understanding of ‘risk’ in the context of the reduced options available for effective treatment for such patients.
All EU citizens deserve access to the best care. Something which member states should have at the heart of their healthcare policy as a right rather than as an aspiration. The Cancer Partnership should go some way towards remedying obstacles and barriers that unnecessarily prevent this being realised. As such it is to be welcomed.
Kristina Andrekute, Chair ECPC Rare Cancer Action Group
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 5 - TABLE OF CONTENTS
About ECPC …………………………………………………………………………………... 7
ECPC Board …………………………………………………………………………………... 14
ECPC Team ………………………………………………………………………...……….… 15
ECPC Members in Action ……………………………………………………………………16
ECPC Membership ……………………………………………………………………………18
The European Partnership for ‘Action Against Cancer’ ……………………………… 24
About the Forum Against Cancer Europe (FACE) …………………………………….. 31
ECPC Cancer Manifesto ……………………………………………………………………. 39
ECPC Cancer Summit Conference Programme ……………………………………….. 40
Questionnaire ……………………………………………………………………………… 44
Plenary: MAKING THE CANCER PARTNERSHIP WORK …………………………….. 47
Session 1: INVESTING IN PRIMARY AND SECONDARY PREVENTION ………….. 60
Keynote: COMMISSION’S COMMITMENT TO ACTION AGAINST CANCER ……… 70
Session 2: PARTNERSHIPS CROSSING BORDERS – Striking a Balance between policy for excellence and a policy for cohesion …………………………… 73
Plenary: SHARING BEST PRACTICE IN HEALTH PARTNERSHIPS ……………….. 79
Session 3: IMPORTANCE OF CANCER RESEARCH ………………………………… 92
Session 4: UNMET NEEDS, INEQUALITIES AND INFORMATION …………………. 107
Closing Session: FINAL CONCLUSIONS ……………………………………………… 112
- 6 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Introduction
Established in 2003, The European Cancer Patient Coalition is the voice of the European cancer patient community, uniquely representing the interests of all cancer patient groups from the major to the rarer cancers. It has been established to represent the views of cancer patients in the European healthcare debate and to provide a forum for European cancer patients to exchange information and share best practice experiences.
We derive our mandate to speak with "one voice" for all cancer patients from our membership and our democratic structure. With its motto "Nothing about us without us!", ECPC represents over 300 patient organisations in 41 countries, including the 27 EU member states.
ECPC’s EU Health Policy Work
One of ECPC's key priorities is to make cancer a priority for action on the European health policy agenda. With its policy activities, ECPC aims to effect change in legislative or regulatory policies to help optimise cancer prevention, detection, treatment and care throughout Europe. The policies also need to ensure that gaps within and between Member States are identified and eradicated, and that best practice is shared.
By speaking with a united voice for all cancer patients, with cancer affecting one third of the EU population, ECPC managed to give a new impetus to tackling cancer more forcefully and collaboratively by the EU and its 27 Member States. Combined efforts between patient groups, members of the European Parliament, the Commission, the EMEA, EU Member States, industry and the oncology community made the fight against cancer once again a political priority for action.
Through our Brussels office, ECPC will continue influencing the European health policy agenda by working closely with e.g. the Members of the European Parliament, the EU Commission (DG Sanco, DG Research, DG Internal Market, DG Enterprise), the Health Policy Forum (HPF), the European Medicines Agency and the EU Committee of Experts on Rare Diseases.
In 2009, ECPC has worked with all stakeholders to make cancer a political priority: for example, in the "European Partnership on Action against Cancer", with the "MEPs Against Cancer", in the European Parliament Elections, the EMEA "Patient & Consumer Working Party", the European Health Policy Forum, the Rare Disease Task Force, or EU research projects like "European Guidelines for Colorectal Cancer Screening" or "RARECARE".
ECPC six Guiding Strategic Goals
• Making cancer a priority for action on the European health policy agenda • Effecting change in legislative or regulatory policies to help optimise cancer prevention, detection, treatment and care throughout Europe. • Ensuring that all cancer patients in the EU have access to timely and appropriate information about prevention, screening, early intervention, on-going clinical trials and best quality treatment and care.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 7 - • Empowering cancer patients to take an active role in shaping European and national policy that impacts on cancer prevention, treatment and care • Ensuring that best cancer practice is shared across the EU and gaps within and between Member States are eradicated. • Fostering co-operation between the cancer patients’ organisations within Europe and to develop a common policy
The Coalition has achieved a lot in its first five years after foundation and, with 270 member organisations in 41 countries (including all EU27), has grown to an influential organisation.
Having employed its first full-time director and anticipating changes in the Brussels office, it must now reconsider its strategy, decide on its five year plan and how it can best meet its future goals.
ECPC Objectives 2011-12
1. Influence EU policy that has an impact on the prevention, detection and treatment of cancer • Rationale: Cancer patients have a right to have a seat at every table where EU health policy that impacts on cancer patients is being decided. Patients need to become equal stakeholders. • Priorities: o Be an important and trusted point of reference for EU institutions on the patients' perspective of cancer. o Bring key cancer issues to the attention of the Commission and the EU Parliament, e.g. through MEPs Against Cancer (MAC) and in consultations. o Be represented on all most relevant EU committees that influence cancer policy from health to research and regulatory issues (e.g. DG Sanco Rare Cancer Task Force, Health Policy Forum; EMEA Committees e.g. PCWP, EMEA Management Board). 2. Outreach: Support ECPC members in their capacity building efforts • Rationale: The stronger ECPC and its members are, the more able ECPC will be to influence EU and national health policy. • Priorities: o Increase membership across the EU, representing all cancer types from the common to the rare cancers. Members should include key influential cancer patient groups on a national and EU level, as well as young organisations in need of support. o Support capacity building efforts of ECPC member organisations through the provision of Masterclasses, advocacy tools, policy information, toolkits etc. o Creating/supporting national advisors, to promote implementation of cancer plans and cancer advocacy at a national level. 3. Build ECPC’s capacity through strategic partnerships • Rationale: Strategic partnerships are vital to achieve ECPC's strategic goals since a unified voice is more powerful and of mutual benefit. Duplication of efforts weakens the strength of all groups involved in the fight against cancer. •
- 8 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK • Priorities: o Build strong partnerships, alliances and embark on joint initiatives with other key European cancer stakeholders (e.g. other patient advocacy groups and professional societies). o Extend existing partnerships and create new alliances. 4. Build internal capacity through an effective ECPC organisation • Rationale: A strong ECPC organisation with solid funding will allow ECPC to increase the scope of its activities, communicate more widely, and operate effectively. • Priorities: o Increase ECPC's overall funding base. Identify new funding streams. o Extend our policy office in Brussels. o Ensure effective ECPC Secretariat. o Expand the number of cancer patient advocates who can represent ECPC in different initiatives through the provision of a training and mentorship programmes. o Secure a highly motivated and active ECPC board with representatives from common and rare cancer groups.
ECPC Summary of activities for 2010
European Medicines Agency (EMA) - ECPC has been a valued member of EMA's Patient & Consumer Working Party (PCWP) for years, represented by ECPC's Vice President Heide Preuss. Recently, it was confirmed that ECPC complies with all stringent criteria and its membership was renewed. Furthermore, The EMA nominated Albert van der Zeijden (Netherlands) and Greetje Goossens (Belgium) as observers in the meetings of the EMA Pharmacovigilance Committee. The Committee has a 3 day meeting every month. The EMA Secretariat introduced the new package leaflet template which has recently been released for public consultation. ECPC will comment until 24 May 2010. In June, Heide will also participate in a conference where an assessment of the effectiveness and efficiency of the European authorization system for medicines will be discussed. See also http://ecpc-online.org/ema
Eurocan Platform - Currently, the EU sets up a key new research platform coordinating "Personalized Medicine and Translational Cancer Research" across Europe, funded by the EU Commission. This will be one of the most influental cancer research project in the EU, led by the Karolinska Institute with 28 formal project partners. ECPC will be the only patient partner in the project, and we will be member of the project's Steering Group and Communication Work- package.
EUnetHTA - Especially in the case of cancer therapies, there are controversial discussions around the costs and value of new treatments. More and more countries are introducing "Health Technology Assessments" ("HTA", e.g. by NICE in the UK), deciding upon whether a technology becomes available to patients or not. It is important that patient groups are involved when these methodologies are discussed and used. Unfortunately, there is yet no standard methodology to process of HTAs in the various EU Member States today. The EUnetHTA Joint Action, initiated and funded by the EU Commission, is a formal collaboration between EU Member States and the Commission, aiming at collaboration on HTA across Europe. ECPC has now been invited to become a member of the EUnetHTA's Stakeholder Forum. By participating, ECPC will make sure that the cancer patient community contributes constructively. See http://www.eunethta.net/
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 9 - Youth - The ECPC Youth Platform, in connection with the ECPC membership will allow young people an active platform to collaborate, share and access knowledge and resources, access documents, professional knowledge so as to enable a systems to exist that enable "Cancer Education and Awareness for All Young People" to be a reality.
The EU "Youth in Action Programme" aims to achieve the following general objectives: • promote young people’s active citizenship in health and their European citizenship with young people from different Member States in particular in health; • develop solidarity and promote tolerance among young people, in particular in order to foster social cohesion between patients and non-patients; • foster mutual understanding between young people in different countries of cancer; • contribute to developing the quality of support systems for youth activities and the capabilities of civil society organisations in the youth field in the area of health;
The platform will contribute to the ECPC objective by promoting a healthier ways of life and reduce major diseases and injuries in the Young age. It will tackle the question of 'How can young citizens tackle health issues in a cross-sectoral way in practice?'
FACE - Forum Against Cancer Europe – please see FACE section on page 31f
Rare Cancers - Some ECPC members suggested that ECPC should support its members representing rare cancers, coordinating activities across diseases. Special challenges of rare cancers are e.g. the lack of local medical expertise, late diagnoses and poor referral rates, not enough interest in research, not enough clinical trials, or the lack of funding and public attention for rare cancers. Therefore, in March 2010, ECPC has launched its "ECPC Rare Cancers Action Group" for those members representing rare cancers. Even though the group is still in an early phase, first priorities have been discussed. ECPC's membership, Board and staff are now committed to take forward a number of joint initiatives and partnerships. The group is also in the process of launching a Declaration on rare cancers at the EU level to highlight the particular concerns of cancer patients. The ECPC Rare Cancer Ation Group is led by Kristina Andrekute from the ECPC member organisation "Lithuanian Rare Cancer Patients Association". See http://ecpc-online.org/rarecancers
Pharmacy Services and Online Pharmacies - Online sales of medicinal products ("online pharmacies") and falsified medicines are a growing concern across the EU. In the current parliamentary debate, ECPC has presented concerns that a) the physical location of online pharmacies are often false, b) medicines are delivered from different locations, c) often online pharmacies do not require a medical prescription in order to purchase drugs, d) selling arguments included not having to see a doctor in order to access drugs, and f) do not declare side effects, drug storage, and shipping conditions. We have argued that there is a need to maintain, strengthen and not undermine the direct relationship between patient, doctor and pharmacist within the supply chain of medicinal products.
EU Health Policy Forum - ECPC was recently reconfirmed as a member of the "EU Health Policy Forum" (EUHPF). The EUHPF consists of selected representative organisations of patients, health professionals and other stakeholders, and acts as an information and consultation mechanism of the EU Commission to ensure that the EU`s health strategy is open, transparent and responds to the public concerns.
Clinical Trials Directive - In January 2010, ECPC has submitted a detailed response on the consultation of the Commission. ECPC heard it was greatly appreciated and will be regarded in the upcoming impact assessment to revise European legislation. Furthermore, ECPC has given cancer patients a voice by speaking about clinical trials and ethics reviews e.g. at the DIA Euromeeting in Monaco, the ECRIN Risk Assessment Workshop in Barcelona, the EFGCP's Final Workshop of Roadmap Initiative for Clinical Research in Europe, and the EU Commission's internal DG Research Training Course. See http://ecpc-online.org/trials
- 10 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK European Parliament - With the start of new EU 5 year legislative term, we are building on ECPC's reputation as an effective and credible organisation at the European Council, Commission and Parliament levels. ECPC has been meeting with a number of MEPs to discuss a series of workshops at the Parliament on key issues in cancer care. Since the start of 2010, major activity in the European Parliament has taken place on the three proposals: a) counterfeiting and illegal distribution of medicines, b) public information on prescription-only medicines c) safety monitoring of medicines, d) cross –border health care and health inequalities. ECPC participated actively in these debates and made active contributions in cancer patients' interests. i) Information to Patients - Whilst the political debate around "information to patients" and "advertising" has been going on for years, European patients continue to suffer from the lack of access to quality information while the bait of miracle healers and door-to-door advertisers is still there. The current political momentum in the EU on "Information to Patients" is timely and welcome. ECPC has continously advocated that information about treatments should address the real needs of cancer patients. To make patients' voices heard, ECPC has recently spoken at various events, e.g. the "European Voice" (with MEP Fjellner), and has published articles which raised strong attention. ECPC has proposed numerous amendments to the parliamentary discussion, and organised a number of meetings with rapporteurs and coordinators in the different Committees. ECPC hopes that this will help create the momentum to make "patients first" a reality in patient information. See http://ecpc-online.org/itp ii) Falsified Medicines - Counterfeit (falsified) drugs represent a two-fold risk for patients. First, falsified medicines may not contain the proper active ingredient in the proper quantity. Secondly, counterfeits may contain toxic materials that might poison the patient. Treatment with falsified drugs may have fatal consequences for cancer patients. Patients need to be absolutely sure that the medicines they consume are really the medicines they expect to be. In January/February 2010, ECPC proposed amendments to the legislative proposal to highlight issues of a) inspection by competent authorities; b) monitoring of the internet; c) awareness campaigns about counterfeit medicines; d) use of warning signs and e) the issue of online pharmacies and patient safety. In March and April 2010, ECPC and the European Patients Forum (EPF) have collaborated closely by providing input into the current parliamentary discussion. As a result, ECPC will also be interviewed by CNN on 4 May to speak about the concerns of cancer patients, and to state the reason why ECPC lobbied for changes in the present legislative proposal. iii) Safety Monitoring of Medicines (Pharmacovigilance) - Innovative treatments are introduced in a large number of markets simultaneously, exposing a large number of patients to new medicines within a short period of time. A strong monitoring system is needed to ensure patients' safety with new medicines. Systems for tracking drug use, warning signals and reporting on adverse drug reactions are a priority for European public health policy. ECPC supported and contributed to the current legislative proposal with amendments on: a) Patient reporting; b) reporting of adverse drug reactions; c) the inclusion of efficacy; d) transparency and e) online portals. ECPC participated in a number of discussions with political advisors of the different political groups and Commission officials. ECPC worked closely with EPF to influence the amendments and the final vote in the EU Parliament's Committees. iv) Health Inequalities – Europe is currently characterised by worrying inequalities in cancer control and care, existing within, as well as between, Member States. For example, the risk of dying from cervical cancer is five times higher in the worst performing Member State than the best. Thus the European Cancer Patient Coalition (ECPC) sees the necessity to pursue the following issues in order to balance these inequalities. ECPC has called on various stakeholders to do this through four fundamental areas to improve the situation for cancer patient across the EU: • Equal and timely access to safe, effective diagnosis, treatments and support in other Member States; • Better information and resources for patients so that they can know about treatment abroad;
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 11 - • Provide the financial mechanisms and resources so as to allow cancer patients to travel abroad for treatment. • Ensure that clinical studies designed to establish the efficacy of new medical treatments of cancers, especially the rare ones. The testing of new cancer therapies in rare cancer patients should be made an essential part of the clinical development process. v) Animal Welfare - The EU Directive on the protection of animals used for research was discussed in the Parliament. ECPC commented that cancer patients are in urgent need of innovative treatments, and this could be threatened by overly excessive regulation on animal welfare. ECPC felt that some of the recommendations of the current proposal would be detrimental to clinical research, without clear benefits for the animals. ECPC was worried that clinical research on non-human primates might become much more restricted. ECPC also stated that studies should be subject to ethics review and judged proportionately according to their potential benefits. vi) 2020 EU Strategy Consultation - ECPC worked as an important part of the main drafting group to prioritise cancer in the European Health Policy Forum's response to the EU 2020 Strategy. ECPC's input was greatly appreciated.
Susan G. Komen Foundation's Global Initiative for Awareness on Breast Cancer is providing a series of training modules for patient advocates, and addressing gaps in breast health awareness. The project is active in 10 countries. Two projects are run in Romania, developed by ECPC's members Romanian Cancer Society and Partner in Progress Association. ECPC became a project partner of the "Pas Alternative" Association, aiming to set up a support group for women diagnosed with breast cancer in Brasov, Romania. ECPC is the coordinator of this project, and its Vice President Simona Ene has been appointed as coordinator of the project. It will be launched on 12 May 2010. The first 6 months of implementation are funded by a grant from the Susan G. Komen Foundation, and it is compulsory to continue with other six month of sustainability.
The ECPC CEE Learning & Sharing Conference to be held on 27/28 November in Bucharest, Rumania (Rin Grand Hotel) addresses patient advocates in CEE countries and aims to build capacity and create momentum to strengthen local groups and to increase collaboration between patient groups, and other stakeholders like nurses. Furthermore it aims to motivate different stakeholders to work together at European and national level, ensuring that the actions are patient-centered and are of benefit to citizens. There are two primary focuses for the conference a) training/capacity building/development of technical skills for advocates and carers and b) sharing of lessons learned, and initiate collaboration between groups.
A secondary focus of the conference will be to educate and raise awareness of issues around cancer care in CEE countries (government, civil society, public-private partnerships, multilateral organizations, academia). Some of the key topics the CEE Learning & Sharing Conference will cover are: i) Building skills for leadership ; ii) Communication and effective campaigning ; iii) Good governance of NGOs, ethics and legal issues; iv) Spotlight on Sharing Best practice and v) EU Policy and what it means to the national level. The conference is co-founded by the BMS Foundation which is a non-profit foundation operating independently of its mother company Bristol-Myers Squibb.
Collaboration
ECPC actively maintains relationships with other European organisations:
Ø European Cancer Organisation (ECCO) Ø European Society for Medical Oncology (ESMO) Ø European School of Oncology (ESO) Ø European Cancer Leagues (ECL) Ø European Oncology Nursing Society (EONS)
- 12 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Ø European Platform for Patient Organisations, Science and Industry (EPPOSI) Ø European Organisation for Rare Diseases (EURORDIS) Ø European Organisation for research and Treatment of Cancer (EORTC) Ø European Federation of Pharmaceutical Industries (EFPIA) Ø European Patients' Forum (EPF) Ø Europa Uomo Ø Europa Donna Ø European Forum for Good Clinical Practice (EFGCP) Ø European Haematological Association (EHA) Ø Drug Information Association (DIA) Ø International Agency for Research on Cancer (IARC) Ø International Union Against Cancer (UICC) Ø International Alliance of Patient Organisations (IAPO) Ø European Genetic Alliances' Network (EGAN)
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 13 - ECPC Board of Directors (May 2010 – May 2012)
Tom Hudson (President) Member organisation: Europa Uomo, Men Against Cancer (MAC), Ireland http://www.cancerworld.org/EuropaUomo and www.cancer.ie/support/mac.php
Sandy Craine (Secretary) Member organisation: The CML Support Group, UK www.cmlsupport.org
Tom van der Wal (Treasurer) Member organisation: Stichting Diagnose Kanker (SDK), The Netherlands www.diagnosekanker.nl
Simona Ene (Vice President) Member organisation: Sarcoma Patients Euronet (SPAEN), Romania
Arthur Masny Member organisation: Polish Cancer Patient Coalition, Poland http://www.koalicjaonkologizna.pl
Francesco De Lorenzo Member organisation: FAVO, Italy www.favo.it
Sarunas Narbutas Member organisation: OHLB Kraujas, Lithuania http://www.kraujas.lt
Henk van Daele Member organisation: Oncologic Centre Antwerp, Belgium
- 14 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK ECPC Team
ECPC Head Office Rue de la Loi 26 1040 Brussels Belgium
David Ryner Interim Director
Email: [email protected]
Denis Horgan Head of External Affairs
Email: [email protected]
Martin Lohr Policy Assistant
Email: [email protected]
Danuta Rydlewska Policy Assistant
Email: [email protected]
ECPC Administrative Office
Michaela Geissler Administration
Email: [email protected]
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 15 - Members in Action – Support from Cancer Patient Advocates:
Kristina Andrekute Chair of the ECPC Rare Cancer Action Group Rare Cancer Patients Association, Lithuania
Email: [email protected]
Sarunas Narbutas ECPC Youth Policy/Project Representative ECPC Board Member OHLB Kraujas, Lithuania
Email: [email protected]
Tom van der Wal ECPC Virtual Partnership/Media Coordinator/M-ICAB ECPC Board Member Stichting Diagnose Kanker, The Netherlands
Email: [email protected]
Patricia Garcia-Prieto M-ICAB/Cross Border Health Care
Email: [email protected]
Kathy Oliver International Brain Tumour Alliance (IBTA)
Email: [email protected]
Jean Mossman ECPC Special Focus on Health Technology Assessment Former CEO of CancerBACUP, UK
Sandy Craine European Action Against Rare Cancers ECPC Board Member CML Support Group. UK
- 16 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Henk Van daele Cancer and Elderly ECPC Board Member Oncologic Center Antwerp
Richard Willoughby Intellectual Property Issues Intellectual Property Lawyer
Jola Gore-Booth Screening and Prevention Europacolon
Louis Denis Prostate Cancer Europa Uomo
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 17 - ECPC Full Members
Selbsthilfe Prostatakrebs Austria Myeloma and Lymphoma Aid Austria Austria Austrian Myeloma Patient Association/EMP Austria Association Cancer House/Verein Krebshaus Austria Us Too (Belgium) Belgium European Myeloma Platform (EMP) Belgium Study Group Brain Tumours Belgium/Werkgroep Hersentumoren VZW Belgium Contactgroup Myeloma Patients Belgium OK vzw - Ontmoeting & Ontspanning Kanker Belgium Oncology Center Antwerp (OCA) Belgium Patient Group Naboram Belgium APOZ- National Association of Patients with Oncological Diseases Bulgaria National Association of People suffering from CML, Bulgaria Bulgaria Bulgarian Women's Cancer Association Bulgaria National Organisation For Cervical Cancer Prophylaxis Bulgaria Cyprus Association of Cancer Patients and Friends Cyprus Patients' Rights Movement of Cyprus (KIDDA) Cyprus Cyprus Anti-Cancer Society Cyprus League Against Cancer Prague Czech Republic ARCUS-ONKO CENTRUM Czech Republic Diagnoza CML o.s. Czech Republic Europa Uomo Brno (Czech Republic) Czech Republic Europa Uomo Denmark (PROPA PROstatacancer PAtientforeningen) Denmark Danish Breast Cancer Organisation Denmark Patient Group for lymph and leukemia cancer patients Denmark Union of Estonian Leukaemia Patients Estonia Estonian Cancer Society Estonia Finnish Prostate Cancer Association (PROPO) Finland ANAMACAP (association Nationale de Malades du Cancer de la Prostate) France French GIST Patient Association/Ass Francais des patients du GIST France mamazone Frauen und Forschung gegen Brustkrebs e.V. Germany Leukaemie-Online e.V. Germany Bundesverband ProstataKrebs Selbsthilfe (BPS) e.V. Germany Stiftung PATH - Patients Tumorbank of Hope Germany German Fatigue Society / Deutsche Fatigue Gesellschaft e.V. Germany German Leukaemia and Lymphoma Aid / Deutsche Leukaemie- und Lymphom- Hilfe Germany The House of Life/Das Lebenshaus Germany Myeloma Euronet AISBL Germany SPAEN (Sarcoma Patients EuroNet) Germany Cancer Patients Society of Macedonia-Thrace Greece Society of Cancer Patients in Katerini/Pieria Greece Pan-Hellenic Association of Laryngectomees Greece Cancer Patient Society of Nigrita Greece Society of Volunteers Against Cancer AgaliaZ0 Greece Society Of Cancer Patients In Veria Greece Association Of Cancer Patient Volunteers-Friends-Doctors KEFI Greece Non-Profit Organization Friends of Cancer "BE STRONG" Greece Hungarian League Against Cancer Hungary Childrens Cancer Foundation Hungary CML and GIST Patient Advocacy Hungary Europa Uomo Ireland Ireland Lymphoma Support Ireland Ireland Men Against Cancer (MAC) Ireland Associazione Italiana Laringectomizzati AIL Italy Associazione Italiana Contro le Leucemie (AIL) Italy
- 18 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Associazione Italiana Malati di Cancro, parenti ed amici (AIMaC) Italy Studio e Assistenza Neoplasie del Sangue (SANES) Italy Associazione Italiana Stomizzati-Finco (AISTOM) Italy Association 'Pina Simone per la tutela dell' ammalato di cancro' Italy Associazione Vela Onlus Italy Italian Federation of Volunteer-based cancer organisations (FAVO) Italy Associazione Nazionale Guariti O Lungoviventi Oncologici ONLUS (ANGOLO) Italy Associazione per la Lotta ai Tumori nell 'Eta' Giovanile (ALTEG) Italy Associazione Nazionale Donne Operate al Seno (ANDOS) Italy Le Donne Scelgono Italy ANDAF SOC. COOP. ONLUS - Assistenza Neoplastici A Domicilio Alessandra Fusco Italy Associazione Don Franco Baroni Italy Associazione per L'Assistenza Morale e Sociale Negli Istituti onlus (AMSO) Italy Associazione Nazionale Assistenza Psicologica Ammalati di Cancro (ANAPACA) Italy Associazione Linfa Contro il Cancro Italy Moby Dick- Associazione per le Unita di Cura Continuativa Onlus Italy Associazione Italiana Oncologia Apparato Digerente (AIOAD) Italy Associazione di Volontariato per Malati Oncologici (ANTHOS) Italy Federazione Italiana Incontinenti (FINCO) Italy Insieme per la Salute Italy Per Te Donna Onlus Italy Associazione Nazionale Donne operate al Seno-Rovigo (ANDOS) Italy Associazione Malati Oncologici (AMO) Italy Associazione Oncologica Pisana P. Trivella Italy Coordinamento La Mela Blu Italy Associazione CuLCaSG - ALCASE Italia ONLUS Italy Progetto Vita 'Perche' Di Cancro si Puo Vivere Italy Noi e il Cancro - Volonta di Vivere Italy Comitato Andrea Tudisco Onlus Italy Gruppo Assistenza Neoplastici (GNA) Italy Associazione Lotta Contro i Tumori Renzo e Pia Fiorot o.n.l.u.s. Italy Associazione IO Domani Italy A.S.L.T.I.-Liberi di Crescere ONLUS Italy Associazione Scientifica per la Terapia e la Ricerca in oncologi (ASTRO) Italy Associazione 'Insieme' Italy Associazione Aiutiamoci a Vivere Onlus Italy Armonia- Associazione per la lotta contro I tumori al seno Italy Associazione Stare Bene Insieme ONLUS Italy Associazione in Famiglia Italy Centro Ascolto Operate al Seno onlus (C.A.O.S) Italy Associazione Allegra Italy Associazione Guida Onlus Italy Fondo Edo Tempia Onlus Italy Associazione V.I.O.L.A. Italy Associazione Umbra per la lotta contro il cancro (AUCC) Italy Associazione QuaViO (Qualita' Della Vita In Oncologia) Italy A.L.I.D.A. - Associazione per il sostegno oncologico Italy Associazione Mano Tesa Ogliastra Italy Associazione Donne Operate al Seno (BIOS) Italy Associazione Nazionale Volontari Lotta contro I Tumori (ANVOLT) Italy Women Against Lung Cancer in Europe Italy Group AIL Chronic Myeloid Leukemia Patients Italy Association of Support for Leukaemia Patients Latvia Latvian Support Society for Oncology Patients "Dzivibas koks" Latvia Society of Oncohematological Patients 'Kraujas' (OHLB) Lithuania Pink Ribbon Society Lithuania Lithuanian Association of Prostate Cancer Patients Lithuania ALMA Lithuania Rare Cancer Patients Association Lithuania A Heart for Cancer Sick Children Luxembourg
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 19 - Breast Care Support Group Malta Borstkanker Vereniging Nederland (Breast Cancer Association The Netherlands) Netherlands Longkanker Informatiencentrum/Lung Cancer Information Centre Netherlands Foundation Contact- Group Leukaemia/NFK Netherlands Contact Group Stem Cell Transplantation Netherlands Contactgroep Myeloom and Waldenstroem Patienten (CMWP)/MM&WM Patient Association Netherlands Asbestslachtoffers Vereniging Nederland (Avn) Netherlands Belangenvereniging Von Hippel Lindau (Vhl) Netherlands Belangengroep M.E.N Netherlands Polyposis contactgroep (PPC) Netherlands Vereniging HNPCC Netherlands Stichting OLIJF Netherlands Vereniging Cerebraal Netherlands Stichting Klankbord Netherlands Stichting Melanoom Netherlands Stichting Jongeren en Kanker (SJK) Netherlands Vereniging Ouders, Kinderen en Kanker' (VOKK) Netherlands Stichting Longkanker Netherlands Stichting Contactgroep Prostaatkanker (SCP) Netherlands Nederlandse Stomavereniging 'Harry Bacon' Netherlands Nederlandse Stichting Voor Gelaryngectomeerden (Nsvg) Netherlands Vereniging Waterloop Netherlands Stichting Kernzaak Netherlands NFK Netherlands Hodgkin Contactgroup Netherlands Stichting Diagnose Kanker/SDK Netherlands European Waldenstroem's Macroglobulinemia Network Netherlands Support Immigrants And Cancer (Stichting Allochtonen en Kanker) Netherlands Amazons (Warsaw) Poland Amazons (Poznan) Poland Association of Men with Prostate Diseases 'Gladiator' Poland National Association for CML Patients Aid Poland Polish Association of Ostomy Care, POL-ILKO Poland Stowarzyszenie Pomocy Chorym Na Gist Poland Sarcoma Patients Association Poland Blood Cell Foundation for children with cancer diseases Poland Fundacja Polska Koalicja Organizacji Pacjentow Onkologicznych Poland POLISH LYMPHOMA ASSOCIATION “OWLE EYES” Poland Viva Mulher Viva Association Portugal APLL Associacao Portuguesa de Leucemias e Linfomas Portugal Associaco Portuguesa de Doentes da Prostata (APDP) Portugal Romanian Cancer Society Romania Association P.A.V.E.L. Romania Romanian Cancer Association - "Common Destinies" Group Romania Association of Cancer Patients from Romania (A.B.C) Romania Romanian Leukaemia Association Romania Myeloma Euronet, Romania Romania "Club of Bistrita Amazons" Association Romania Asociatia Oncologic Rom Romania Association Partners in Progress (APP) Romania Europa Uomo Slovakia Slovakia Cancer Patients Association of Slovenia Slovenia Slovenian Breast Cancer Coalition - EUROPA DONNA Slovenia Slovenia FEFOC Spain Spanish Association of Lymphoma Sufferers Spain Grup Agata Spain FECMA Spain Spanish Group of Cancer Patients Spain Prostatacancerfoerbundet (PCF) Sweden Gynsam Sweden
- 20 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Swedish Lung Cancer Support Sweden Swedish Brain Tumor Association Sweden Breakthrough Breast Cancer United Kingdom Macmillan Cancer Support United Kingdom Leukaemia Care Society United Kingdom Lymphoma Association HQ United Kingdom Christian Lewis Trust - Cancer Care for Children United Kingdom Myeloma UK United Kingdom B.E. Bosom Friends United Kingdom Cancer Link Aberdeen and North (CLAN) United Kingdom Gist Support UK United Kingdom Bradford Cancer Support United Kingdom Samantha Dickson Research Trust United Kingdom Sarcoma UK United Kingdom National Conference of Cancer Self Help Groups United Kingdom Childhood Eye Cancer Trust : CHECT United Kingdom Riding's Asbestos Support and Awareness Group United Kingdom Tak Tent Cancer Support Scotland United Kingdom Keith Cancer Link Support Group United Kingdom Radiotherapy Action Group Exposure (RAGE South) United Kingdom Ovacome United Kingdom Roy Castle Lung Cancer Foundation Glasgow United Kingdom Mulberry Centre United Kingdom Manx Cancer Help Association United Kingdom Ulster Cancer Foundation (UCF) United Kingdom Lets Face It United Kingdom Complementary Cancer Care Trust United Kingdom Durham and District Womens Cancer Support Group United Kingdom Doncaster Cancer Support Group United Kingdom Cavendish Centre for Cancer Care United Kingdom Cancer Information and Support Services (CISS) United Kingdom GKT Cancercentre User Liaison Group United Kingdom CML Support Group UK United Kingdom Gynae C United Kingdom PCaSO (Prostate Cancer Network) United Kingdom Cancer Equality United Kingdom Lynn's Bowel Cancer Campaign United Kingdom AMEND Association for Multiple Endocrine Neoplasia Disorders United Kingdom AMEND 1 (Association for Multiple Endocrine Neoplsia Disorders) United Kingdom Brain Tumour UK United Kingdom East Lancs Integrated Health Care Centre United Kingdom Consumer Liaison Group of the National Cancer Research Institute United Kingdom Prostate Cancer Support Association (Central England) United Kingdom National Association of Laryngectomee Clubs United Kingdom Patient Cancer Support Federation/Europa Uomo United Kingdom Bowel Cancer Wales (BCW) United Kingdom Myelodysplastic Syndromes Foundation (MDSF) United Kingdom Melanoma Action & Support Scotland (MASScot) United Kingdom Rarer Cancers Forum United Kingdom IBTA International Brain Tumour Alliance United Kingdom Brainstrust: The Meg Jones Brain Cancer Charity United Kingdom Teenage Cancer Trust United Kingdom Mouth Cancer Foundation United Kingdom
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 21 - ECPC Associate Members
Patients Rights Protection Center Armenia Breast Cancer Network Australia Australia Cancer Voices NSW Australia Australia Bosnia and Humanitarian Association Of Prjateljice 'Girlfriends' Herzegovina Bosnia and LIFE/Zenica Herzegovina Bosnia and Association Of Stoma Patients ILCO Of Republic Of Srpska Herzegovina Bosnia and Association for those affected by acromegaly and pituitary disease Herzegovina ABRALE Brazil Bulgarian Association for Patients’ Defence Bulgaria Willow Breast Cancer Support and Resource Services Canada HULL Croatian Leukemia and Lymphoma Society Croatia Invalid Society ILCO Karlovac Croatia Invalid Society Ilco/Stoma Klub Nova Gradiska Croatia Croatian Disabled Societies ILCO Association Croatia "FOR A NEW DAY" Croatia Help those with Cancer/KHYD Cyprus Friends For Life Cyprus Faculty Of Medicine Czech Republic Independent Patient Group Denmark ESCSG Basel France Myelom-Selbsthilfe Südbayern e.V. Germany Laugh and Walk (LAW) Germany Selbsthilfegruppe Krebs bei Frauen/Genitaltumoren Germany Selbsthilfegruppe Plasmozytom/Multiples Myelom Germany Selbsthilfegruppe Multiples Myelom (Kurpfalz und Westpfalz) Germany The Ormylia Foundation, Center for Disease Prevention Greece Irish Cancer Society Ireland MOUTH HEAD & NECK CANCER Ireland Israeli CML Patients Support Israel Israel Cancer Association Israel Fondazione Teresa e Luigi Beaumont Bonelli per le Ricerca sul cancro Italy PROST Italy Associazione House Hospital Onlus Italy Associazione Maria Bianchi Italy ANTEA Associazione – Onlus Italy Cancer Patient Advocacy Bureau Latvia Myeloma Patients Organisation, Latvia Latvia CancerVoices New Zealand New Zealand STAND UP TO CANCER AWARENESS CAMPAIGN INITIATIVE (SUCACI) Nigeria Esperantra Peru Foundation for Support of People with Urology Cancer Poland Stowarzyszenie Pomocy Chorym na Szpiczaka Poland The Fulfilled Dreams Fund/Fundacja Spelnionych Marzen Poland Triedinstvo Russian Federation Association of Myeloma Patients of Serbia Serbia Association ILCO Serbia Serbia and Monten. ISKRA Serbia and Monten. Slovak League against Cancer/Venus Club Slovakia Myeloma Euronet, Slovakia Slovakia Slovenian Union for Health promotion and health education Slovenia Mieloma.Com Spain Blodcancerfoerbundet (Blood Cancer Foundation) Sweden Foundation for the Promotion of Bone Marrow Transplantation Switzerland Switzerland Forum Lung Cancer Switzerland
- 22 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Taichung Kai-Huai Taiwan Turkey Oncology Patients Friendly Society Turkey Trabzon Hope and Welfare Organisation Turkey Youth Accumulation Association Turkey Pioneering Association of Stem Cell Transplantations Turkey Sakarya Leukemia and cancer patients health and education association Turkey FANCONI ANEMIA ASSOCIATION Turkey "Zaporuka" National Charitable Foundation Ukraine Skinship (UK) United Kingdom African Caribbean Leukaemia Trust (ACLT) United Kingdom Mustard Tree MacMillan Centre United Kingdom MacMillan Butterfly Centre United Kingdom Ardgowan Hospice United Kingdom Solihull Cancer Support Group United Kingdom Wirral Holistic Care Services United Kingdom UK Children's Cancer Study Group Hearts of Oak United Kingdom Abacus Cancer Self Help and Support Group United Kingdom Hospice of St Mary of Furness United Kingdom Castleside Group United Kingdom Cornwall Cancer Help Groups (Truro) United Kingdom British Thyroid Foundation United Kingdom British Lung Foundation United Kingdom CancerCare United Kingdom Patients Association United Kingdom Vulva Awareness Campaign Organisation United Kingdom Myeloma UK - Yorkshire Support Group United Kingdom Myeloma People Network (Scotland) United Kingdom Cancer Partnership Research Group (SWSH Cancer Network) United Kingdom Life Raft Group United States Kidney Cancer Association United States Simasoh-Nani International United States The Max Foundation United States
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 23 - THE EUROPEAN PARTNERSHIP FOR ACTION AGAINST CANCER
The "European Partnership for Action Against Cancer" was launched by the EU Commission in September 2009. The overall aim of the Partnership is to support Member States and other stakeholders in their efforts to tackle cancer more efficiently by providing a framework for identifying and sharing information, capacity and expertise in cancer prevention and control. It aims to engage a wide range of stakeholders across the EU in a collective effort and with a common commitment to addressing cancer. It will also help to avoid scattered actions and duplication of efforts, and contribute to better use of limited resources. By the end of the Partnership (2013), the objective is for all Member States to have integrated cancer plans, and to reduce cancer by 15% by 2020.
The work of the Partnership is undertaken in nine working groups. The activities will be coordinated by a steering group and the Secretariat. An Open Forum will be held once a year, aiming to provide a platform for the members of the Partnership and other stakeholders.
Work Package 1: Overall Coordination & Steering Committee
This Work Package concerns the overall management and coordination of the Joint Action. It is led by the National Institute of Public Health of Slovenia. It ensures that the project progresses according to the work plan and reports to the EU as required. The suggested structure contains the • Coordination Team which will be responsible for the day-to-day management, ensuring that deliverables are produced on time and that the project is executed within budget. • Steering committee (SC) which will advise the coordination team on the direction and execution of the Joint Action. Most importantly the Steering Committee will be reviewing the National Cancer Plans (NCP) in Member States. Additionally they will consider any future applicants for the EU Partnership.
What ECPC expects from the WP:
• Achieve the coordinated initiation and implementation of national cancer plans, especially beyond primary and secondary prevention actions, as people who have cancer require better care and not solely those who do not have cancer • manage the project and to make sure that it is implemented as planned • establishing the state-of-play in the development of National Cancer Plans in the EU, with a health system approach;
- 24 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK • conducting an analysis of the content (…Not only what, but… How the programmes will be put into practice, with what resources, specific financing to face the challenges, governance issues ?. . .); • evaluating the effectiveness of the existing plans, and ultimately…. • facilitating the transfer of knowledge and expertise obtained on the design, challenges encountered, implementation and outcomes of National Cancer Plans between the EU Member States.
Why cancer patients need it:
In 1997 I was affected by sudden epileptic fits. The origin: a high grade brain tumour, glioblastoma multiforme. After surviving and recovering for a few years, I felt ready to take up a new responsibility: together with 20 other patients, their families and a complete medical staff we founded “Werkgroep Hersentumoren”, Study Group Brain Tumours Belgium. We work on information, contacts and quality of treatment and support for brain tumour patients and their families and also or the medical staff. We also were involved when the Belgian “National Cancer Plan” was Frank from formulated. We feel that national cancer plans are important for strategically tackling Belgium the complexities of cancer.
Work Package 2: Dissemination, Virtual Partnership
The Partnership has been established to support countries to tackle cancer by providing a framework for sharing information, capacity and expertise in cancer control. The Virtual Partnership is crucial to achieving this aim. It will consist of a web-based platform which will facilitate collaboration of interested parties in- and outside the Partnership. The platform will include a discussion forum, comments section and will have interfaces to social media websites. It will be used to communicate about EU actions in the four "pillars" of the Partnership and will provide an important means of communication about the work of the Partnership to the general public, policy makers and all interested stakeholder groups. The WP is headed by Maria Chemlova of the National Health Information Center, Slovakia.
What ECPC expects from the WP:
• Provide public information about the Partnership • Foster collaboration and networking, sharing resources, knowledge and project-related files, and engage in discussions • Collect input and support consultations between stakeholders, members and non- members • Involve everyone not directly involved in Partnership actions to follow via the Internet what's going on and to contribute ideas.
Why cancer patients need it:
17 years ago I was diagnosed with Multiple Myeloma, an incurable cancer of the plasma cells. I had never heard of this cancer before and was lucky to have a doctor who did not let me fall in a deep black hole. He also got me interested into cancer support group work. I have been off treatment for the last two years. But then during my check up another cancer was found – breast cancer. My experience with Multiple Myeloma has equipped me also to deal with this cancer. In 2003 we started the first Multiple Myeloma support group in Austria.
Ilse from Austria
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 25 - Work Package 3: Evaluation
The Evaluation Work Package, lead by Tanja Kamin of the Ljubjana University, will assess the project's performance against the objectives defined in the overall project (general level) and specified in the particular work package (particular level). The ultimate objective of the final evaluation will be to assess the strengths and weaknesses.
Work Package 4: Secretariat & Open Forum
The work of the Partnership will be presented and actions discussed in three annual Open Forum conferences over the life-cycle of the project, which are planned to be held in Spain (2011), Italy (2012) and Slovenia (2013). Each event will be organized as a high level plenary of the European network of policy makers, cancer experts, academia, civil society, health professionals. The Partnership's Secretariat will support the organization and coordination of the Open Forum. It’s lead by Sandra Rados Krnel of the National Institute of Pulic Health, Slovenia.
Work Package 5: Health Promotion and Prevention
This Work Package focuses on a re-launch of the "European Week Against Cancer" (EWAC) which took place across Europe between 1989 and 2005. It was a health promotion campaign originally organised as part of the European Commission's "Europe Against Cancer" Programme. Many Cancer Leagues had been involved in the planning and implementation of the campaign from the start. Wendy Tse Yared of the ECL heads this WP. Each EWAC II will be devoted to a theme related to cancer prevention in EU and take place annually.
What ECPC expects from the WP:
• Establishing European Week Against Cancer • Improving Communications of the European Code Against Cancer and Targeting Population Groups • Involving Young European Partners (YEP!) in Actions Against Cancer! • To increase public awareness of cancer prevention linked to EWAC campaigns, to be measured at start and end of proposal period • To effect positive change in behaviours of selected sample population groups • produce a draft communication plan with templates for roll out by various stakeholders at EU and national level • Establish a user-friendly Cancer Code website to support network groups to cost- effectively promote, share and encourage communication of the Code. • Young people should be invited to discuss the development of a clear health awareness message or messages that would have relevance for them. • Rather than using current methods of disseminating any such message, we would ask their advice as to how best this should be done, e.g., by communicating with each other in real time through Facebook, Twitter and/or other social networking websites
- 26 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Why cancer patients need it:
I am the mother of two children. I am a professional photographer. Four years ago I had breast cancer. I was then 24 years old and 8 months pregnant. This was very hard time for my family. Now I am healthy and I have a fantastic son. I spend a lot of time with my family and I'm very happy every day with them. I am an example that breast cancer can also touch young people. If breast Maret cancer touches you very closely, it's important not to lose hope and from Estonia believe in yourself. If you have some problems or questions, please, contact your doctor.
Work Package 6: Screening and early diagnosis
Despite EU-wide support for cancer screening programmes, the disparity in implementation is substantial. The current half a billion examinations in the EU over a 10-year period have great socio-economic implications, yet more than double this volume is needed to implement the screening tests recommended by the Council of the EU: altogether 125 million examinations per year. This WP, headed by Ahti Anttila of the Finnish Cancer Registry, will improve implementation of the Council Recommendation on Cancer Screening by alleviating key barriers, to make screening and other areas of early detection of appropriate quality, accessible to all citizens who may benefit.
What ECPC expects from the WP:
• continue efforts to achieve full implementation of screening programmes for breast, colorectal and cervical cancer on cancer screening and periodically evaluate the effectiveness of available screening programmes, including the technology used and the different organisational approaches, with a view to further enhancing quality; • ensure population-based cancer registration, which can provide accurate and comparable data on the cancer burden; • continue their efforts as regards access to screening, diagnosis, treatment and rehabilitation, • and to medication, in particular to reduce existing health inequalities related to cancer
Why cancer patients need it:
I was diagnosed with breast cancer in 1995 and have had several recurrences since then, including bone metastasis. Everyone who has been given a diagnosis of cancer knows only too well the black hole of despair and the feeling of helplessness this brings. My own experience propelled me to become involved in patient group work with mamazone women and research against breast cancer in Germany and through ECPC at European level. Recently mamazone undertook a survey of women’s attitude towards mammography screening. Top line results show that women generally have a very positive attitude towards screening. But they would wish for improvement in the way the results of screens Heide from Germany are communicated to them by health professionals. They also argued for extending the age for screening beyond the current target group of 50 and 69 years, to younger (under 50) and older (above 70) women. From our perspective, the EU screening initiative is important for us in Germany as it provides the basis and pressure for improving our national guidelines. The earlier a cancer can be detected the lighter the treatment and chances for survival. Breast cancer screening can save many women’s lives.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 27 - Work Package 7: Healthcare
The Healthcare Work Package will focus on new organizational perspectives in cancer care, specifically networks of cancer care at regional level and for rare cancers, including patient's perspective and standards in pediatrics oncology. It aims to increase variability in both delivery of services and outcomes of care. The responsibility for this WP lies with J M Borras Andres of the Institut Universitari de Salut Pùblica de Catalunya.
What ECPC expects from the WP:
• identify and assess best practices and gaps in cancer care across European health services, at national, regional or local level, including the patient perspective. • identify and assess best practices in networks of cancer care in the territory as well as for low frequency tumours or complex therapies, with a particular interest in organizational issues. • promote harmonization in guidelines on specific aspects of cancer care. • assess implementation of clinical guidelines in practice with a focus on inequalities of access and outcomes in care. • Provide training in psychosocial care skills in specific under-served countries • disseminate knowledge collected to decision makers, clinicians and cancer plans at local, regional and national level. • provide recommendations for improving cancer care.
Why cancer patients need it:
In 1992 I was diagnosed with a Ewing sarcoma of the upper jaw. And I was sent to a Hospital to Germany. I had to undergo 18 operations involving skin tissue grafts. During my cancer journey I had no psychological help at all. There were no other patients with the same disease I could talk with. That would have been very important for me and make me feel not so alone. I am now a “survivor” with still a lot of late effects with which I have to deal.
Stephanie from Luxemburg
Work Package 8: Research
Michael Baumann of ECCO wants to address existing limitations by bringing together Member States, NGOs, industry and other stakeholders in the cancer research continuum, with the aim of developing a concerted approach to achieve coordination of one third of research from all funding sources by 2013 within selected areas of cancer research. Despite the impressive pace of cancer research, translating basic discoveries into new and more effective treatments and diagnostics remains complex and difficult to manage
What ECPC expects from the WP:
• Draw guided questionnaires to collect Members States, Associated Countries and all stakeholders priorities in terms of cancer research areas. • Bring together Member States and Associated Countries, NGOs, industry and other stakeholders in the cancer continuum to discuss and agree on key challenges and research priorities in European cancer research. • Identify gaps and areas of research where cooperation and coordination may be instrumental to reduce the European burden of cancer. • Work towards coordination of one third of research from all funding sources by 2013 within selected areas. • WP 8 work package survey should translate and reflect this contemporary ethos rather than one of the past
- 28 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK • This amounted to a commitment to foster self-sustained cooperation and coordination over and above specific tumour types, disease-specific projects and country borders. • A survey might indeed identify gaps in certain cancers, technologies or methodologies but would probably only provide a fragmented picture. ECPC would like, once again to propose to structure the assessment around a “cancer research matrix” (prevention, screening, diagnosis, treatment, QoL, care) and to assess areas where networks of excellence remain absent. Mapping networks of excellence against and developing recommendations based on their absence would permit the Cancer Partnership to assist in supporting their strategic foundation and/or growth. • ECPC acknowledge the important advantages gained through the introduction of target based healthcare delivery over the past couple of decades which of course rests on careful epidemiology and the managed use of resources in an inelastic market. We are not saying this conception or the apparatus that underpins it is or should be made redundant.
Why cancer patients need it:
I am a survivor and I am also a very stubborn person. This is what will get me through my second course of chemotherapy since my diagnosis and operation for stage IV Ovarian cancer. If I don’t get through it, I will have had a fantastic time enjoying every day by riding, socialising, partying and also doing everything I can to pass that philosophy on to others whether they be ill or well. Be positive and never give up doing the things that you have always done and even those that you didn’t find time for before. I am stubbornly going to ‘cling on’ until they find a new drug and, if they don’t, I will have lived so much in so short a time and hopefully my legacy will be to persuade others, whether ill or Judy from well, to do the same. the UK
Work Package 9: Information & Data
The health information useful to support policy action on cancer control has been identified by EU projects, but presently it is not available at a Europe-wide level. The main scope of WP9 is to contribute building a shared, advanced and comprehensive cancer information system for European Union. A EU map of cancer information will be built, using the data and experience of several sources (e.g. RARECARE, EUROPREVAL, EUROCARE). A conference will take place in year 2, in the framework of the Open Forum. This WP is led by Milena Sant of the Fondazione IRCCS ‘Instituto Nationale dei Tumori’ in Italy.
What ECPC expects from the WP:
• map the main sources of cancer data in Europe, identifying the most important information gaps and the priority topics to be supported under the Partnership • coordinate analysis and provision of cancer burden indicators (incidence, mortality, survival and prevalence) by existing European activities. • build a virtual European analysis capacity by networking research institutes and expert groups active in statistical analysis of population based cancer data. • implement a common program for the dissemination of cancer information • organize a final European conference on Health Information to propose further objectives for the next programme of Community action in the field of health (2014-2020).
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 29 - Why cancer patients need it:
When I was diagnosed with GIST in 2004, there was absolutely no information available for patients regarding this very rare type of digestive cancer and its possible treatments. "GIST: Orphan Cancer" was the only definition I was given when I asked to the French National Cancer Institute. I was then 29 years old. I could not satisfy myself with this as I strongly needed to know what I would have to fight, how I could keep my hope and fully express my "fighting spirit". I guess it had to be the same for my peers, therefore, I decided to launch a national GIST organization and dedicate myself to inform patients, families and doctors about this disease and raise people's awareness about rare cancers. Estelle from France
Expected 5 year outcomes of the European Partnership for Action Against Cancer
With activities in the areas of health promotion and prevention, screening and early diagnosis, identification and promotion of good practice in cancer-related health care, a coordinated and collaborative approach to cancer research, and health information and comparable data, the European Cancer Partnership is expected to have the following overall outcomes of the EPAAC after five years:
• Initiated relevant actions aiming to reduce cancer incidence by 15% by 2020. • Reviewed existing National Cancer Plans and having encouraged all Member States to have one • Assessed and mapped the landscape of cancer care across the EU • Held "Open Forums", annual high-level conferences where the work of the Cancer Partnership was presented and actions were discussed • Reviewed clinical guidelines outlining best practice in cancer-related care, and provided cancer prevention toolkits to be used across the EU • Provided suggestions for coordination and prioritization of areas in cancer research • Provided data on cancer incidence, mortality, survival, prevalence and costs in Europe • Provided the "Virtual Partnership", a platform leveraging diverse social media functionalities to facilitate collaboration of interested parties both within and outside the Partnership
- 30 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 31 - About the Forum Against Cancer Europe (FACE)
Cancer affects us all. Did you know that one in three Europeans will be diagnosed with cancer in their lifetime? With hardly any family spared from cancer, it is vital that the battle against cancer is a political priority at the European level – and again a priority for the European Parliament. For more than 20 years, cancer patients have worked successfully with European Parliamentarians to learn about, debate and form policies geared towards cancer patients in a cross-sectoral and cross-party manner, making use of outside expertise and participation of stakeholders. The Forum Against Cancer Europe (FACE) will be the continuance of this work.
The work of The Forum Against Cancer will consist of:
• monitoring the work of the European Union; • monitoring the situation of various legislation that passes through the EU that will effect cancer patients in the EU Member States and • liaising with civil society groups to relay their concerns at the European level. • The concept behind FACE is to provide the human face of cancer through the voice of the cancer patients, to address many important issues in the EU that concern cancer, and present the faces (e.g. MEPs and EU Commission) that will take a lead on these topics. A number of MEPs are committed to follow one or more issues for the term of their legislature, for example on cancer research, cross border health care, rare cancers, clinical trials, palliative care etc. • Europe has been aware of the problems for cancer patients for more than a decade. But it needs political will. It is vital that strong MEPs continue their efforts to raise cancer and stimulate dialogues and actions between all parties
74 FACE MEPs are supporting FACE
FACE six guiding priorities for the legislative period 2009-2014
1. Making cancer a priority for action on the European health policy agenda 2. Effecting change in legislative or regulatory policies to help optimize cancer prevention, detection, treatment and care throughout Europe. 3. Ensuring that all cancer patients in the EU have access to timely and appropriate information about prevention, screening, early intervention, on-going clinical trials and best quality treatment and care. 4. Empowering cancer patients to take an active role in shaping European and national policy that impacts on cancer prevention, treatment and care. 5. Ensuring that best cancer practice is shared across the EU and gaps within and between Member States are eradicated. 6. Fostering co-operation between the cancer patients’ organisations within Europe and to develop a common policy.
- 32 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK What MEPs can do
MEPs can support cancer patients by supporting the Forum Against Cancer Europe and by: • sending a strong political signal that immediate and • concerted action is needed to reduce cancer rates by prevention and screening, and improve cancer outcomes. • harnessing Community policies and instruments such • as the Public Health Programmes and the Framework Research Programmes to the fight against cancer. • ensuring that best practice is shared• across the EU and gaps that exist in cancer prevention, diagnosis, treatment and care between and within Member States are eradicated. Please join us in our fight against cancer!
Focus areas of FACE
FACE currently concentrates on the following issues connected to cancer patients: • Cancer Research Cancer research is essential to uncover new approaches to clinical and public-health intervention. Cancer research should aim to identify the causes of cancer and to develop better strategies for prevention, diagnosis, treatment and cure. • Health Inequalities There is good evidence that significant European variability exists both in delivery of services and outcomes of care at each stage of the patient pathway, from information provision through to palliative care. • Clinical Trials Directive Clinical Trials have been a key factor in improving cancer survival and advancement in treatment. However, the Directive and their national implementations have slowed the opening of trials, without a large improvement in patient safety, which already had a good track record in trials in oncology, or a desired acceleration or harmonization of pan-European cancer research. • Information to Patients Whilst the political debate around „information to patients“ and „advertising“ has been going on for years, European patients continue to suffer from the lack of access to quality information while the bait of miracle healers and door-to-door advertisers is still there. The current political momentum in the EU on „Information to Patients“ is timely and welcome. • Rare Cancers Special challenges of rare cancers are e.g. the lack of local medical expertise, late diagnoses and poor referral rates, not enough interest in research, not enough clinical trials, or the lack of funding and public attention for rare cancers. • Palliative Care With the well-known demographic changes which are taking place in the EU, palliative care will be of increased importance in providing care for the ageing population. Raised to the policy level, this translates to a need to efficiently use resources (both human and financial) to guarantee the best possible quality of care. • Youth and Cancer Since cancer is mostly appearing in the third quartile of life, cancer advocacy is often focused on that population, disregarding that healthy lifestyle and early prevention might save young Europeans from getting cancer. A clear health awareness message has to be sent to the European youth.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 33 - Why Cancer Patients established FACE
With every third European getting cancer in his lifetime, any European Parliament initiative must address the topics that concern those that had the unfortunate event of a cancer diagnosis. The Forum Against Cancer Europe (FACE) is a platform established by the cancer patient community, represented by the European Cancer Patient Coalition (ECPC). ECPC is an umbrella organisation of more than 300 patient organisations from 42 countries, mainly from the 27 EU Member States, representing organisations supporting hundred thousands of cancer patients in Europe day by day. ECPC is a truly patient-led organisation because it is run and governed by cancer patients, having a volunteer Board of 9 cancer survivors from 9 different countries. This is a unique composition and the strongest legitimacy an initiative can have to address issues of concern in cancer. Health policy is often very complex and does not reflect the day-to-day hardships that cancer patients go through. FACE aims to bring the patient’s concerns as citizens into a fruitful dialogue with Members of the European Parliament and to make the voice of the cancer patients heard, hopefully providing better outcomes for cancer patients and eradicating the burden of cancer for future generations. We hope to be able to win the support of many more FACE Champions to fight together the battle against cancer!
FACE is an initiative of ECPC
The „Forum Against Cancer Europe“ is an initiative by the European Cancer Patient Coalition (ECPC). ECPC is representing more than 300 cancer patient groups across 42 countries.
- 34 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK PRESS RELEASE
Brussels, 25 June 2010
"Forum Against Cancer Europe" (FACE) launched in the European Parliament, supported by more than 50 MEPs
On 23 June a new initiative of the European Cancer Patient Coalition (ECPC) entitled Forum Against Cancer Europe (FACE) was successfully launched at the European Parliament. The Forum Against Cancer Europe" (FACE) has been set up to continue the successful dialogue of the European cancer patient community with European Parliamentarians, Commission and all concerned stakeholders. It was launched with a workshop entitled "More Cancer Research Needed in the EU: Cancer Affects Almost Every Family". The meeting was hosted by MEP Marisa Matias and featured high level speakers from the European Parliament, EU Commission, research community and patient groups. Already 57 MEPs are supportive of the new FACE initiative.
With hardly any family spared from cancer and with Europe having a strong influence on many health issues on the national level, it is vital that the battle against cancer is a political priority for the European Parliament and other European Institutions.
The Forum Against Cancer Europe is an initiative by the European Cancer Patient Coalition (ECPC). ECPC represents more than 300 cancer patient groups across 42 countries, most in the EU Member States. ECPC is a truly patient-led organisation, run and governed by a volunteer Board of 9 cancer survivors from 9 different countries and a Director who has cancer.
The Forum Against Cancer Europe (FACE) has been set up to continue the successful dialogue of the European cancer patient community with European Parliamentarians and put the emphasis on cancer patients. It aims to learn about, debate and form policies geared towards cancer patients across cancers, regions and political parties. FACE is committed to promoting action against cancer as an EU priority. This needs political will and it is vital that strong Members of the European Parliament (MEPs) continue to address cancer. 57 MEPs are already showing their face by officially supporting FACE.
The launch event of FACE took place on 23 June 2010 and was entitled “More Cancer Research Needed in the EU: Cancer Affects Almost Every Family”. This workshop, hosted by MEP Marisa Matias and ECPC, gathered speakers of the Commission, the European Parliament, research organisations and patients. In addition, a "Written Declaration on Cancer Research" was launched in the European Parliament on the same day.
In her opening speech, MEP Marisa Matias said that "the majority of cancers are unfortunately still untreatable. EU citizens should have equal rights in terms of treatment and access to research. The need for cancer research cannot be discussed without the involvement of patients". She thanked ECPC for taking the initiative with FACE. The Chairman of the ENVI Committee, MEP Jo Leinen, also welcomed the FACE initiative in the Parliament as the citizens' chamber. With the European Parliament Resolution on Cancer in 2008, he referred to
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 35 - the Parliament's commitment on cancer which culminated into the set-up of the European Partnership for Action Against Cancer. The Chairman of ITRE Committee, MEP Herbert Reul, welcomed the FACE workshop as necessary and good: "There are so many events here in the Parliament, but sometimes there are events that are much more important – like this one". MEP Antonyia Parvanova stated the MEPs commitment and willingness to work together and to push the Commission and Council. MEP Michèle Rivasi addressed the need for research on preventive measures, stating the example of lack of research on the risks of nanotechnology. MEP António Fernando Correia de Campos called for an improvement of screening programmes and added that patient groups need to be empowered to increase patient participation in these programmes. MEP Alojz Peterle highlighted the need for inclusive action in the fight against cancer and that MEPs can act as "stimulators, emulators and fighters against cancer". He wished FACE success and highlighted the need of MEPs to cooperate with NGOs.
Prof. Gordon McVie, European Institute of Oncology, outlined that in order to create progress in cancer research, “coordinated ‘network signalling’ of multidisciplinary teams including researchers, public health experts, patients, sociologists, psychologists, economists, lawyers and industry must take place. The EU should fund the networking". He called for more risk taking in cancer research. Prof. Per-Anders Abrahamsson, Secretary General of the European Association of Urology, addressed the need to put basic research into clinical practice and shared an outlook on the upcoming "genomic era" of more tailored therapies.
David Harmon, Member of the Cabinet of the Commissioner for Research, Innovation and Science, Máire Geoghegan-Quinn, said that "cancer is everybody's problem", and added that regulatory barriers need to be removed to give the EU leadership in cancer research. He also added that counselling of patients must be taken into account in EU policy. Jan-Willem van de Loo from the Directorate General of Research highlighted the investment of the Commission in cancer research within the 6th and 7th Framework Programme, and highlighted key initiatives of the Commission to coordinate cancer research in Europe. Stefan Führing from the Directorate General for Health and Consumers outlined how EU Policy can affect inequalities. He explained the impact of the EU Clinical Trials Directive and the Commission's current action to improve it. Joana Namorado from DG Research highlighted the challenges of Ethics in Clinical Trials and the need for balance of interests between patients, researchers and industry.
Tom Hudson, President of ECPC, said that "The Forum Against Cancer Europe is the grassroots policy movement initiated by patients that wish to achieve a patient-centered approach in EU Policy". He added that "we all need to show our faces to tackle cancer. Cancer patients need cancer research, and cancer research needs cancer patients". Testimonies of three cancer patients followed, highlighting their challenges in cross border healthcare to access clinical trials, their campaigns to improve access to therapies, and their urgent need for progress in research.
The new FACE website at http://www.forumagainstcancer.eu will support the activities of the initiative as well as future workshops of the Forum. Rather than being a one-way communication medium, it will develop tools to foster the dialogue, providing information about supporters and focus topics, and interfaces to up to date communication in Social Media channels.
With the launch of the FACE, the European Cancer Patient Coalition is confident to continue the important collaboration with MEPs, the European Parliament, the EU Commission and other stakeholders to improve the situation for all cancer patients across Europe.
Please join FACE in the fight against cancer!
- 36 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK PRESS RELEASE
Brussels, 16 September 2010
"Forum Against Cancer Europe" (FACE) workshop on "Cross-border HealthCare" with Commissioner John Dalli attracts enormous feedback in European Parliament
Launched as recently as last June the Forum Against Cancer Europe (FACE) with the support of 70 MEPs successfully continued the dialogue of the European cancer patient community with European Parliamentarians, Commission and all concerned stakeholders. On 15 September 2010, a FACE workshop entitled "Cross-border HealthCare: A NECESSITY for Cancer Patients" was held in the European Parliament. The event was co- hosted by MEPs Dagmar Roth-Behrendt and Nessa Childers and gathered speakers of the Commission, the European Parliament, research organisations and patients. Especially the attendance of the European Commissioner for Health and Consumer Policy John Dalli was highly appreciated by all participants and demonstrates the importance of the debate on patients’ rights in cross-border healthcare on the European agenda.
In his opening speech MEP Jo Leinen expressed his hope that a compromise will be reached on the Commission’s proposal on "patients’ rights in cross-border health care" made in 2008. Tom Hudson, President of ECPC, said that "Patients’ rights must be established and upheld, not only for our health and well-being, but also for the good of the economy and the future of a democratic European Union – so it is a not a ‘ magic wish dreamt up out of the blue." Additionally he emphasized that "Cross-border Health Care is Needed Now". MEP and co-chair of the workshop Nessa Childers thanked the European Cancer Patient Coalition (ECPC) for taking the initiative with FACE to make sure that "the human face of healthcare comes across". She added that the issue of patients’ rights cannot be left to the European Court of Justice and that is why "we need legal certainty for cross-border healthcare. "ECPC board member Sarunas Narbutas reminded that there is "a undeniable lack of time for cancer patients" therefore a non-technical approach is needed "protecting cancer patients against prior authorisation." Co-chair and MEP Dagmar Roth Behrendt criticised the Member States and Parliamentarians for reducing the cross-border healthcare issue only on the question "What does it cost?" She also urged that for the patients’ sake "the request for prior authorisation should not be overstretched".
Dr Daniel Mart, Former CPME President and Rapporteur of the CPME working group on Cross-border Care remarked that cross-border healthcare is an issue pushed by the European citizens. He criticised the Member States for not taking into consideration the citizens’ needs and deemed that "the Spanish proposal is even worse than the Swedish one". Paolo Casali, Board Member of the European Society for Medical Oncology (ESMO) underlined in his presentation the importance of clinical trials in the cross-border healthcare debate. He also stressed the significance of the European reference network for rare cancers extending to information, patients and doctors and reminded that funding is needed for these networks. ECPC Board Member Arthur Masny called for an improvement of national health systems because of the lack of tools and organisation in the different Member states. He also claimed European centres of excellence for patients and doctors.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 37 - European Commissioner for Health and Consumer Policy John Dalli presented the European Commission’s proposal for a directive on patients’ rights on cross-border healthcare. He stated that his aim is to "ensure the best care for all citizens" and that the proposal represents an important step forward. The Commissioner further stressed the importance of eHealth for revamping health systems across Europe and improving care. Commissioner John Dalli hopes that an agreement on the proposal on cross-border healthcare will be reached soon. He asked the different parties to work together and not forget during the decision making process that "bureaucracy kills" and that "best is the enemy of good".
Professor Patricia Garcia Prieto, Professor at Solvay Business School told about her struggle as a cancer patient with Belgian authorities getting an E 112 prior authorisation form to join a clinical trial in France. Prof. Garcia Prieto lamented the lack of information regarding patients’ rights in cross-border healthcare. Even for a highly educated person like herself it was extremely difficult finding information on this topic and hence National Contact Points are needed urgently.
Dr Adamos Adamou, Medical Oncologist and Former MEP highlighted the necessity for Member States to upgrade their health systems so patients can be treated at home near their families and where their language is spoken. Jackie Morin, from the Directorate General for Employment, Social Affairs and Equal Opportunities presented the legal status quo on cross- border healthcare, regulation 883/2004. He pointed out that another legal instrument should be complementary to the regulation is needed in order to cover patients’ needs concerning cross- border healthcare. Prof. Dr. Jacques Scheres, Vice Chairman of the European Center for Disease Prevention and Control (ECDC) in Stockholm reported on his positive experiences in cross-border healthcare cooperation in the Rhine-Meuse region. Prof. Dr. Scheres perceived that especially in border regions cross-border healthcare can have positive effects on the national health systems by forcing countries to adapt to higher standards in the neighbouring country.
MEP Antonyia Parvanova recalled that "no more importance should be added to a special disease". She underlined the need of the FACE workshop as an instrument for patients to raise their voice. Finally she proclaimed that she had the dream that "one day healthcare will be enclosed in the treaty." Kristina Andrekute, Chair of the ECPC Rare Action Cancer Group brought to mind that "cancer does not care in which country you live or how much money you earn" thus "cross-border healthcare is a chance for patients, especially suffering from rarer cancers."
Dr Louis Denis, Oncologist reminded that we should not forget that even commoner cancers like prostate or colorectal cancer need cross-border healthcare.
- 38 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK ECPC Cancer Manifesto
The European Cancer Patient Coalition (ECPC) and its member organizations call on all stakeholders to help us fight cancer in their country and across the European Union.
One third of EU citizens are diagnosed with cancer and cancer kills about 1.7 million each year. We are aware that there are considerable inequalities in health status and cancer survival rates within and between Member States of the European Union. These inequalities will only increase under the current economic crisis as our health and social systems come under financial pressure.
We call on you to work towards implementing the European Parliament Cancer Resolution by supporting us in our campaign to:
• Encourage and adopt national Charters for patients' rights according to European guidelines to ensure that the rights of cancer patients are upheld and enforced.
• Urgently develop and, where existing, improve national cancer plans, setting priorities and effectively allocating resources for improving cancer control and research across the European Union, paying attention to rare or difficult to treat cancers.
• Ensure cancer patients are included in formulating and monitoring all research, legislation and policies that affect their health.
• Invest in cancer prevention in Member States and implement the Council Recommendation on Cancer Screening of 2003 by setting up or improving national high quality population-based screening programmes.
• Vigorously promote cancer awareness in the general public through the existing Europe against Cancer Code.
• Make timely, high quality and up to date information, diagnosis, treatment and care available for all cancer patients in each European Member State..
• Firmly tackle the socio-economic and geographic divide, which leads to inequalities in cancer control
• Oppose discrimination in the latest cancer treatment because of age, race, gender and domicile.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 39 - ECPC Cancer Summit 2010: Making the Cancer Partnership work
13-14 October 2010 The Square, Brussels, Belgium
Wednesday, 13 October
8.30 - 9:30 Registration & Exhibition
9.30 - 12:30 MAKING THE CANCER PARTNERSHIP WORK Chair: Tom Hudson (ECPC President)
• EU Belgian Presidency's leadership on cancer – Council Conclusions on the Cancer Partnership Olivier Belle, Belgian Ministry of Social Affairs and Public Health
• European Commission – Participatory Approach to involve cancer patients Paola Testori Coggi, Director General, DG SANCO
• European Parliament Responding to EU citizens: The 2008 Parliament’s Resolution on combating cancer in the enlarged European Union Linda McAvan, MEP
• The Cancer Partnership Sandra Radoz, National Institute of Public Health, Slovenia
• The EESC Opinion on EU Action Against Cancer Ingrid Kössler, European Economic and Social Committee, Sweden
• Member States Proactive Partners in supporting the Partnership – the example of France Christine Berling, National Cancer Institute (INCa), France
• Cancer Patients as Pro-active Partners and their Participation in the Partnership Sandy Craine, ECPC and The CML Support Group, UK
Viorica Cursacu, Myeloma Euronet Romania
Louis Denis, Secretary of Europa Uomo, Belgium
Sarunas Narbutas, ECPC and OHLB Kraujas (Cancer Patient), Lithuania
• Questions & Answers
- 40 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK 12.30 - 14:00 Networking Lunch
14:00 - 16:00 INVESTING IN PRIMARY AND SECONDARY PREVENTION Co-chairs: Wendy Tse Yared (Director ECL), Sarunas Narbutas (ECPC Board Member)
• Making screening programmes more successful and motivating citizens to participate Nessa Childers, MEP Dr. Christa Maar, Burda Foundation, Germany
• The Council Recommendation on cancer Screening and promoting screening and early detection Marina Yannakoudakis, MEP Dr. Larry Van Karsa, IARC, France
• Moving Forward with Screening Jola Gore Booth, EuropaColon, UK
• Cancer Prevention and Youth Education Anna Lee, Schools for Health in Europe, The Netherlands
Questions & Answers
16:00 - 16:30 Coffee Break
16:30 – 17:15 KEYNOTE: Commission’s commitment to Action Against Cancer Co-chairs: Marisa Matias (MEP), Tom Hudson (ECPC President)
• John Dalli, Health Commissioner
17.15 - 18:30 PARTNERSHIPS CROSSING BORDERS – Striking a Balance between policy for excellence and a policy for cohesion
Co-chairs: Miriam Dalmas (Member States Representative, Malta), Sandy Craine (ECPC)
• Keynote: Making the Partnership Work for Young People Despina Spanou, DG SANCO
• Young people in the Partnership Sarunas Narbutas, ECPC and OHLB Kraujas (Cancer Patient), Lithuania
• Virtual Partnership – The importance of e-Health and Virtual Communities Maria Chmelova, National Health Information Center, Slovakia
• Cross Border Healthcare – Wishes and Reality Patricia Garcia-Prieto, Cancer Patient, Belgium
19:00 Networking reception & dinner at THE SQUARE Panoramic Hall
Cancer Patients at the Center of the Partnership: Patients Voice – Reports from Patients from different Member States of Unmet Needs that the Partnership Should Take i-Patient
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 41 - Thursday, 14 October
09:30 – 11:15 Plenary: SHARING BEST PRACTICE IN HEALTH PARTNERSHIPS Co-Chairs: Josep Maria Borras Andres (Healthcare WP7 leader in Partnership), Simona Ene (ECPC Vice President)
• National Cancer Plans - and patient involvement Josep Maria Borras Andres, Healthcare WP7 leader in Partnership, Spain
• The role of centers of excellence Wim H. van Harten, OECI Designated Chairperson, The Netherlands
• Multi-disciplinary teams Sara Faithfull, eCancer nurse, EONS, UK
• Training strategies to improve psychosocial and communication skills among providers Luzia Travado, Viva Mulher Viva Association, Portugal
• Role of National Patient Organisations in shaping National Cancer Plans – The UK Example Roger Wilson, SPAEN, UK
• A SWOT Analysis of the first Belgian National Cancer Control Plan Hedwig Verhaegen, Flemish League Against Cancer, Belgium
11:15 – 11:45 Coffee Break
11:45 – 13:45 IMPORTANCE OF CANCER RESEARCH Co-Chairs: Marisa Matias MEP (FACE Champion for Cancer Research) Henk Van daele (ECPC Board Member)
• Coordinating research to close research gaps and stimulate innovation Dr. Ruxandra Draghia-Akli, DG Research
• Coordinating research to close research gaps and stimulate innovation, ECCO Perspective Prof. Michael Baumann, ECCO President & WP Leader WP8, Germany
• Role of European Networks of Excellence Prof. Rüdiger Hehlmann, European Leukemia Net, Germany
• Role of Member States in Research Dr. Johannes Bruns, German Cancer League, Germany
• Translational Research Ulrik Ringborg, Representative of EurocanPlatform, Karolinska Institute, Sweden
• The challenges of rare cancers Dr. Paolo Casali, Instituto Tumori, Italy
• Role of Patients in Cancer Research Ingrid Klingmann, EFGCP, Belgium Kim Wever, PatientPartner project, The Netherlands
- 42 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK 13:45 – 15:15 Lunch
15:15 – 16:15 UNMET NEEDS, INEQUALITIES AND INFORMATION Co-Chairs: Dr. Andrea Micheli (Unit of Epidemiology Istituto Nazionale per lo Studio e la Cura e dei Tumori Milano, Italy, and WP leader for Cancer Information & Data), and Francesco De Lorenzo (ECPC Board Member)
• Inequalities in cancer care The importance of cancer data & registries to understand the cancer burden Dr. Andrea Micheli, EUROCHIP, Italy
Inequalities in Access to Information and Treatment Henk Van daele, ECPC Board Member, Belgium
• Challenges in patient information EMA perspective Isabelle Moulon, Head of Medical Information European Medicines Agency EMA, UK
Patient perspective Frank Boeye, Study Group Brain Tumours (Cancer Patient), Belgium
16:15 FINAL CONCLUSIONS & Farewell Coffee
• Tom Hudson, ECPC President • Jan Geissler, ECPC • Sara Faithfull, EONS
Acknowledgement The ECPC Cancer Summit arises from the project “ECPC Cancer Summit: Making the Cancer Partnership work” which has received funding from the European Union, in the framework of the Public Health Programme. The following additional sponsors are supporting the ECPC Cancer Summit with an unrestricted grant: Bristol-Myers Squibb, Eli Lilly, Novartis, Pfizer, Roche and Sanofi Pasteur MSD The funding enables ECPC e.g. to provide travel bursaries to patient groups from across Europe to attend the Summit.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 43 - ECPC Cancer Summit 2010: Making the Cancer Partnership work
13-14 October 2010 - The Square, Brussels, Belgium
QUESTIONNAIRE
Please help us by filling in this questionnaire and return it to the registration desk at the end of the FIRST CONFERENCE DAY (13 OCTOBER). Thank you.
Name Country
Organisation
Please clearly tick the one option you feel applies the most:
1. Cancer research is essential to uncover new approaches to clinical and public-health intervention. Cancer research should aim to identify the causes of cancer and to develop better strategies for prevention, diagnosis, treatment and care. However in Europe, cancer research seems to be largely fragmented across Member States, languages, funding systems and regulatory frameworks, reducing the competitiveness of European Cancer Research in comparison to other countries. Would you agree? Your response: Yes No I don’t know
2. Clinical Trials have been a key factor in improving cancer survival and advancement in treatment. However, the Clinical Trials Directive, introduced in 2001 and transformed into National law across the EU until 2004, has slowed the opening and conduct of trials, without a large improvement in patient safety. Would you agree action would needs to be taken in the next 3 years to reverse the trend of Clinical Trials moving out of Europe? Your response: Yes No I don’t know
3. Whilst the political debate around "information to patients" on prescription medicines has been going on for years, hundred thousands European Cancer patients continue to suffer from the lack of access to quality information while the bait of miracle healers and door-to-door advertisers is freely available. The current political momentum in the EU on "Information to Patients" is timely and welcome, but do you expect there will be a consensus that will give patients access to the information cancer patients need ("yes"), or would you not agree to more liberal information to avoid information in advertising ("no")? Your response: Yes No I don’t know
- 44 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK 4. With the well-known demographic changes which are taking place in the EU, palliative care will be of increased importance in providing care for the ageing population. Raised to the policy level, this translates to a need to efficiently use resources (both human and financial) to guarantee the best possible quality of care. Do you think palliative care has adequate attention today, as needed by European Cancer Patients? Your response: Yes No I don’t know
5. Since cancer is mostly appearing in the third quartile of life, cancer advocacy is often focused on that population, disregarding that healthy lifestyle and early prevention might save young Europeans from getting cancer. Would you agree that more efforts should be spent that clear health awareness message are sent to the European youth? Your response: Yes No I don’t know
6. Many cancers are appearing in the third quartile of life. However, ageism in clinical trials is regularly being observed: participants in clinical trials are often younger, potentially reducing the risks of co-medications and complications with co-morbidities, but at the same time potentially biasing the results of the trials. Do you agree more efforts should be made to include older patients in clinical trials, even though this might carry the risk negative impacts on the success rate of cancer trials? Your response: Yes No I don’t know
7. Patient groups and other Civil Society Organisations often struggle to raise enough funds to have the resources available to operate effectively. Often, public funding programmes are restricted or too complicated that volunteer-driven organisations can apply for funds. Would you agree more efforts need to be taken by the Commission to improve public funding support for patient groups operating on an international level? Your response: Yes No I don’t know
8. Significant EU variability exists in both delivery of services and outcomes of care. To tackle the burden of cancers cancer, better information about incidence, survival and mortality – and differences between regions and countries – are required. Population- based cancer registries are a key tool to get a solid understanding of the differences, and to develop tools to tackle them. However though, their establishment requires funding which would then not be available in another place of the healthcare system. Would you think that every Member State should be mandated to provide a population-based cancer registry, disregarding the additional costs incurred? Your response: Yes No I don’t know
9. Cancer is set to reach epidemic proportions in Europe as people live longer. Governments need to take action now to make sure every Member States develops and implements a comprehensive national cancer plan which tackle the disease on all fronts – from prevention, screening and early detection to top-quality diagnostics and treatment. Such a plan must include cancer research and ensure that cancer patients have access to timely and high-quality care, including psycho-social support. They also need to include patient groups at its heart to be more effective. Do you agree in full with this statement? Your response: Yes No I don’t know
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 45 - 10. Cancer outcomes could be improved if the broader range of activities and services for cancer were performed at the higher levels seen in the better performing health systems. Evidence-based guidelines in cancer are often not put into practice, hampering improvement in cancer care and patient outcomes. Pan-European networks of excellence do not exist for many cancer types. Do you agree the EU should play a stronger role to establish guidelines and networks of excellence? Your response: Yes No I don’t know
ECPC thanks you for spending your time and thus assisting us to better representing European Cancer Patients.
- 46 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK MAKING THE CANCER PARTNERSHIP WORK
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 47 - Tom Hudson ECPC President
1985-1997 CEO of the Irish Cancer Society, 1993-1997 President of the ECL 1998-2002 Chairman of UICC COPES programme 1998-2006 Council Member of UICC Past Vice Chairman of ENSP Past Board Member of ASH Ireland (10 years) 2010 Current President of Europa Uomo (The Men’s Prostate Cancer Coalition) Chairman of MAC, (Men against Cancer) Ireland. 2010 Current President of the European Cancer Patient Coalition (ECPC)
- 48 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Paola Testori Coggi Director-General for Health and Consumers
Paola Testori Coggi is Director General in the Directorate-General for Health and Consumers of the European Commission since April 2010.
In July 2007 she became Deputy Director General for Health and Consumers with specific responsibility for food safety and animal health, inspections and scientific matters.
Since 2000, as Director for the Safety of the food chain, she has been responsible for the White Paper on food safety and the legislative action programme as well as the management of emergencies.
She was previously Advisor for consumer health in the Cabinet of Commissioner Emma Bonino and she worked on the definition of the new EU policy on consumer health after the crisis of the food safety crisis.
Paola Testori Coggi joined the European Commission in 1983 in the Directorate-General for Environment where she worked until 1989 in the field of the control of dangerous chemicals and industrial risks. Afterwards, she served as Member responsible for the research programmes on life sciences, environment and energy in the Cabinet of the Vice-President of the European Commission, Filippo Maria Pandolfi. She also worked in the EU Joint Research Centre where she was responsible for administrative coordination.
Paola Testori Coggi is a biologist from the University of Milan, Italy, with a Master degree in Ecotoxicology. In 2008 she received a Doctor Honoris Causa in Veterinary Medicine at the University of Cluj, Romania.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 49 - Paola Testori Coggi Director-General for Health and Consumers
Abstract on the European Partnership for Action Against Cancer
The European Partnership for Action Against Cancer was launched in September 2009. The overall aim of the European Partnership, which will initially run until 2013, is to support Member States in their efforts to tackle cancer more efficiently. To achieve this aim, the Partnership will engage a wide range of stakeholders including Member States, non-governmental organisations, patient groups, researchers, industry, and organisations of health professionals. All of these stakeholders share a common commitment to fighting cancer. The aim and indeed the specificity of the Partnership is that it brings these efforts together into a collective European response to prevent and control cancer. The Partnership approach should also contribute to avoiding duplication of efforts, and thus help to make better use of limited resources. The overall objective is that by the end of the Partnership, all Member States should have integrated cancer plans. This should contribute to achieving the long-term aim which is to reduce cancer incidence by 15% by 2020. In the Commission Communication of 2009, which lays down the foundations of the European Partnership for Action Against Cancer, 4 key areas for action are identified: 1. Health Promotion and cancer prevention, including screening; 2. Identification of best practice in cancer-related healthcare; 3. Collection and analysis of comparable data; 4. A coordinated approach to cancer research.
The Partnership will include a certain number of horizontal activities: the Virtual Partnership will facilitate dissemination of Partnership activities on a website, and yearly Open Forums will also take place to enable members of the Partnership and other stakeholders to exchange information, present the results of their work and improve their understanding of relevant cancer- related issues. The work of the Partnership is due to be mainly taken forward through a Joint Action, which is a financial mechanism under the EU Health Programme. It is expected that the activities should start towards the end of this or the beginning of next year. Patients have been closely and actively involved in Partnership activities since the very beginning.
- 50 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Linda McAvan MEP
BA (Hons.) Languages (French and Spanish), (1984)
MA (International Relations), (1991)
Translator, Agence Europe (1984-1985)
Administrator, Confederation of Socialist Parties of the European Community (1985-1988)
Press Officer, Youth Forum of the European Community (1988-1990)
Head of Information Policy, European Community Youth Exchange Bureau (1990-1991)
European Officer, Coalfield Communities Campaign (1991-1995)
European Strategy Officer, Barnsley Council (1995-1998)
In the European Parliament: Deputy Leader, European Parliamentary Labour Party (1999-2004); Vice-Chair, Socialist Group (2004-2009)
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 51 - Sandra Radoz Slovenian Ministry of Health
Born: 27.11.1969, Bosnia and Hercegovina
Education: Medical doctor, diploma in 1996 at Medical Faculty, University of Ljubljana; State exam in 200 in Ljubljana. Postgraduate Diploma in Management - Pg.D. in 2007 at Faculty of Management, University of Primorska, Koper
Current position: Head of the Research Department, National Institute of Public Health, Slovenia (NIPH)
Professional Experience: Employed at the National Institute of Public Health as a Head of Research Department. Main field of research is alcohol policy. She is involved in various research projects, the most important being the European project “Building Capacity - Implementing coordinated alcohol policy in Europe” involving 10 working packages (WP) and joining 31 partner countries and 10 European organizations. NIPH is the main partner, and Sandra Radoš Krnel is the co-ordinator of the project, that is in its final stage. Other research projects that she is involved in are: DG Sanco project VINTAGE - “Good Health into Older Age”, where she is a coordinator at NIPH and is working on providing the evidence base and collecting best practices to prevent the harmful use of alcohol amongst older people for the South- eastern Europe; 7. FW project STEPS - “Strengthening engagement in public health research” dealing with promotion the engagement of civil society organisations in public health research and to better quality of life for Europe’s citizens, and national project MOSA (Mobilization of community for more responsible use of alcohol), financed by the Slovenian Ministry of Health, where her role in the project is the analysis of the stakeholders’ view on alcohol policy in Slovenia.
- 52 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Ingrid Kössler Member of the European Economic and Social Committee
Born on February 16, 1944 Nationality: Swedish
Education: Bachelor of Arts in English, German and Linguistics at the University of Gothenburg 1970 Master of Business Administration At the University of Gothenburg, School of Economics and Commercial Law 1989
Languages: Swedish, English, German spoken fluently
Professional experience: 1970 – 1973 The nine-year compulsory school Goteborg, Teacher 1974 – 1988 Swedish National Labour Market Administration, AMV, Goteborg Deputy director-general. 1988 – 1995 AVAB Electronics, Goteborg, Personnel Manager Since 1996 Personnel Consultant
Political experience: 1984 - 2007 Member Executive Board Göteborgs Spårvägar AB 1995 - 2006 Member City District Council Lundby Göteborg 2000 – 2004 Member Local Health Care Committee Göteborg 2002 - 2006 Deputy Regional Council Västra Götaland Sweden
Breast cancer advocacy engagement: 1988 - Member of the Breast Cancer Organization 1995 – 2000 President of the Breast Cancer Organization Göteborg 1996 – 2000 Board Member of the Swedish Breast Cancer Association Since 2001 President of the Swedish Breast Cancer Association – BRO Since 2003 Member of Swedish Breast Cancer Group 2004 - 2009 Board Member of EUROPA DONNA 2006 - 2008 President of EUROPA DONNA 2009 Past President of EUROPA DONNA 2005 - 2009 Board Member of Swedish Cancer Society
Expert in the Official Report on a National Cancer Control Strategy, Sweden 2008
Project LEAD Graduate NBCC 2000 New York Project LEAD Clinical Trials NBCC Washington 2003 AACR Scientist Survivor Programme Anaheim 2005
Since 2006 Member of the European Economic and Social Committee Brussels, Belgium
Rapporteur for European Economic and Social Committee on European Partnership Action Against Cancer 2009
Breast Cancer survivor since 1988
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 53 - Christine Berling Head of Department for International Affairs, National Cancer Institute (INCa), France
C. Berling is currently working at the French National Cancer Institute, as Head of Department for International Affairs. M.Sc. in Physics, PhD in Biophysics, C. Berling has over 15 years’ experience of working in public-private partnership and technology licensing, initially with the French National Institute of Health and Medical Research and subsequently at the European Commission, DG RTD Health Directorate. C. Berling has also some experience of working in the area of development research.
From 2007 to 2009, C. Berling worked at the European Commission, DG RTD Health Directorate, on the setting up of the Innovative Medicine Initiative Joint Undertaking, a public-private partnership between the European Commission and the European Federation of the Pharmaceutical Industry Associations. Previously she had worked at the French National Institute of Health and Medical Research (Inserm), that she joined in 1989, following a post-doctoral fellowship at the University of Cambridge, UK. In 2000 she was appointed Deputy Director of Inserm’s Technology Licensing Department. Between 1998 and 2006, she has served as an independent expert with the Belgian Ministry of Research and Technology, with the French Court of Justice on litigation cases and with the European Commission. She has also contributed to stakeholder panels for preparing the IPR policy of the 7th Framework Program. She has been Board member of various French Health agencies between 1989 and 2007, and been instrumental in setting up guidelines for public-private cooperation with the new cluster initiative Medicen Santé in France. C. Berling held a counsel position with the General Secretary of the French Institute for Development Research in 2006-2007.
- 54 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Christine Berling Head of Department for International Affairs, National Cancer Institute (INCa), France
Abstract: MAKING THE CANCER PARTNERSHIP WORK: Members States as Proactive Partners in supporting the Partnership
There exists large discrepancies in Europe between and within countries in terms of cancer mortality and incidence; we all have different health systems and organisations, but cancer control is global and one can learn from the successes of others. Since 1985 there has been a political commitment of the European Parliament and the European Council to help member states reduce the cancer burden with notable successes in the fight against tobacco. In France the fight against cancer has be endorsed at the highest level of the state. This political commitment of the President of France was key to mobilize all needed resources and players from across the cancer control continuum. In 2003, by launching a first comprehensive cancer control plan, the ambition and commitment was to reduce mortality and incidence from cancer, through coordinated programs. This first plan acknowledged the strengths and weaknesses of the system in terms of prevention, early detection and patient’s management, and established realistic and achievable priorities. The need for a better coordination at national level was recognized and the National Cancer Institute was created and empowered as national coordinating authority. The second national cancer control plan (2009 – 2013) (1) is currently being implemented. It builds upon the achievements of the first plan to ensure that the continuity of flagship activities is maintained while bringing new ambitions in terms of outcomes for cancer patients by addressing in particular health inequalities. The French National Cancer Institute (INCa), as per its mandate, plays a national pivotal role and supports the full spectrum of cancer control activities that have value in a comprehensive strategy.
There is considerable added value in working together to prevent and control cancer more effectively. It is therefore essential to built synergies and act in partnership to share knowledge and experience. In this respect the European Partnership for Action against Cancer provides the timeliest frame to support high-quality cancer control initiatives for system change at European level. By launching this ambitious initiative the European commission offers a much needed support to help mobilize the entire European cancer community around targeted objectives. The process itself of establishing EPAAC has value since it brings together stakeholders from around Europe and across the cancer control continuum, and builds on their cumulative years of experience. Cancer control is science based and therefore research is a key component. The research work package of the partnership will set the milestones of a concerted agenda to achieve coordination of research, with the view to avoid unnecessary duplication, maximise investment and gain momentum in the process of research translation toward the patients. As co- leader of this work-package with the European CanCer Organisation, INCa is committed to build the partnership as a showcase of the synergies that European partners can achieve by working together. ______(1) http://www.e-cancer.fr/component/docman/doc_download/4787-plan-cancer-version-anglaise
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 55 - Sandy Craine ECPC The CML Support Group, UK
Diagnosed in December 1998 with Ph+ Chronic Myeloid Leukaemia (CML) in late chronic phase. She was the first European to take part in the early trials of imatinib (Glivec) travelling to the US in 1999, in order to access the drug though a phase ll trial at OHSU, Portland Oregon.
In 2000 Sandy co founded an online CML patient support group. She is a trustee and Director of The CML Support Group.
She is co founder of the CML Advocates Network, which was launched in 2006 to help CML patient group organisers and advocates can find support and build alliances on global basis.
In 2007 Sandy was elected to the board of the European Cancer Patient Coalition (ECPC) and as Secretary to the Board, she is able to work with a broader remit in order to influence and effect real change in health care policy at both National and EU levels.
Sandy has a special interest in working within the rare cancer area and represented ECPC on the organising committee and workshop taskforces for the ESMO Rare Tumours in Europe: Challenges and Solutions Conference, Brussels 2008.
She continues to work as part of the committee to further ongoing actions arising from this conference.
She is also a long-standing member of the Steering Committee of the annual international patient group advocates conference ‘New Horizons in GIST and CML’.
Alongside her commitment to patient advocacy Sandy continues to work as a ceramist and jeweller from her studio in north London. www.cmlsupport.org.uk www.cmladvocates.net www.ecpc-online.org www.chocolatefactoryn16.com
- 56 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Viorica Cursaru Myeloma Euronet Romania
University Bucharest – Bachelor Degree in English Literature
SDS Training Center UNHCR Geneva: distance learning training courses from 1 month to two years • Personnel Administration • Salary and Post Adjustment • Performance Assessment Management • Financial and Project Management • Financial Control • Assets Management • Middle Management Learning program • Operation Management Learning program • Medical Insurance Plan (soft) • Performance Appraisal – objectives setting (soft) • MSRP – Management System for Resources and People (integrated soft HR and personnel administration/project & financial management)
Work Experiences
Nov.92 – up to date Snr. Admin/Finance Assistant United Nations High Commissioner for Refugees in Bucharest
Feb.91 – Nov.92 Translator / Interpreter International Federation of Red Cross and Red Crescent in Romania
Sept.80 – Dec.90 English Professor Ministry of Education
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 57 - Louis Denis Secretary Europa Uomo
Louis Denis has served as the Director of the Oncology Centre Antwerp (Antwerp, Belgium) since February 1998 further to his extensive career as an academic urologist specialised in urological oncology.
Upon completion of his training as a urologist at the Medical College of Virginia (USA) in 1964, he joined the urological department of the Antwerp City Hospitals and was later appointed as Coordinating Chairman in 1973. He joined the Vrije Universiteit Brussels Faculty as Professor in Urology from 1978 till his emeritat in 1998.
His early career centred on diagnostic markers and technology and he introduced transrectal ultrasonography to Europe in 1976. Since 1980 he became involved in novel drug development and clinical research studies in urological oncology. Louis Denis has served as President or Board Member of a number of national and international urological organisations. He has also been a Visiting Professor in Urology for a number of universities worldwide, named an Honorary Member of six urological associations including the American and Japanese Urology Associations, and Editorial Board Member for several urology and oncology publications. He was the first managing director of the European Journal of Cancer and founded both its structure and concept in 1988. His career as a urological oncologist began as a founding member of the Urological Group of the European Organisation for Research and Treatment of Cancer (EORTC). He served the EORTC through a number of appointments including President (1988-1991) during which time he supervised the reorganisation of the EORTC’s Central Office into new headquarters with a 70 million (Belgian Francs) grant from the Belgian government.
He was later appointed as Chair of the Education & Training Division in line with his Chair of the Flemish Advisory Council for Cancer Prevention (1983-1997) and assumed several positions at the European School of Oncology and the European Institute of Oncology. He has also served as officer of the European Society of Surgical Oncology (ESSO) and the former Federation of European Cancer Societies (FECS), as treasurer of the Union Internationale Contre le Cancer (UICC) following a long term service through other different positions including Secretary General.
He is currently Treasurer of the International Consultation on Urological Diseases (ICUD), and Chairman of the International Prostate Health Council (IPHC). Recent roles and responsibilities have included the co-coordination of the European Randomised Screening Study for Prostate Cancer, Founder and Secretary of Europa Uomo, the European Coalition against Prostate Cancer, and Chair of US TOO in Belgium. He has edited or co-edited more than 50 books and monographs and published more than 300 peer reviewed articles.
- 58 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Sarunas Narbutas ECPC Board Member
Education
2007 – to date Vilnius University, Law Faculty, Law Studies. 2003 – 2006 Šiauliai Julius Janonis Gymnasium, summa cum laude. 1999 – 2003 Šiauliai „Sandoros“ Secondary Catholic School. 1995 – 1999 Šiauliai „Tevo Benedikto Andriuskos” Primary Catholic School.
Work Experience
2008 summer Traineeship in European Parliament, Lithuanian MEP (Gintaras Didžiokas) Office.
2007 – to date Member of OHLB “Kraujas”, Policy Making Group, Political Affairs Manager.
2004 summer Traineeship in Chancery of Lithuanian Government, EU acquis Implementation Department.
Accomplishments
Certificates on “Psychological Assistance for Addicted People”, “Prevention of Emotional Disorders”, “New Ways of Approaching Cancer in Lithuania”, “Youth Tackling with Leukemia”, “Speech, Argumentation and Debates”, “The Art of Rhetoric’s”, “Superior Virtues of a Lawyer”, “American Court System: Litigation”.
Participant in international projects “European Partnership Action Against Cancer” (Brussels, Belgium, 2009); “Youth Tackling with Leukemia” (Ankara, Turkey, 2007); “Model United Nations” (Kalmar, Sweden, 2005); “Communication of Lithuanian – Russian Institutions for Education (Moscow – Voronezh, Russia, 2006).
Project manager of national campaign for bone marrow donor ship in Lithuania “Be Good”; co- organizer of annual television fundraising campaign “The Day of Benevolence”; co-organizer of annual marathon “The Run for Hope”.
Nominated as “Fighter of the Year” in “Lithuanian Honour 2008” national annual awards; nominated for “the Strength of Spirit” in “Siauliu Krastas 2007” regional annual awards; publisher of the petition “the Effective Treatment for Cancer” signed by 180 000 Lithuanians (5% of total population in Lithuania).
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 59 - INVESTING IN PRIMARY AND SECONDARY PREVENTION
- 60 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Nessa Childers MEP
Nessa Maria Vereker Childers (born 9 October 1956) is an Irish Labour Party (S&D) politician who is currently a Member of the European Parliament (MEP) for the East constituency.
She is a former councillor for the Green Party in Blackrock in south Dublin in Ireland. She was elected in 2004 and resigned from her seat in August 2008.
Childers originally joined the Labour Party before the 2004 local elections, but when she failed to get a nomination to run for Dún Laoghaire- Rathdown County Council, she switched to the Green Party and was elected as a Green councillor.
In September 2008 she resigned from the Green Party to run for the Labour Party in the East constituency at the 2009 European Parliament election.
She has an Arts and Psychology degree from Trinity College, Dublin and a postgraduate diploma from University College Dublin. She previously worked as a psychoanalyst in private practice. She is the daughter of the fourth President of Ireland, Erskine H. Childers and his second wife, Rita Childers.
Childers is a member of the European Parliament's Committee on the Environment, Public Health and Food Safety and the delegation for relations with Japan. Furthermore, Childers is a substitute member of the Committee on Culture and Education.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 61 - Dr. Christa Maar CEO Felix Burda Foundation
PhD in History of Arts Thesis: „Trompe l’ oeil in Dutch 17th Century Painting“
Chair of the Felix Burda Foundation Since 2001 the Felix Burda Foundation is committed to promoting colon cancer screening programs and to drastically cutting its mortality rate. With the help of large media campaigns and various different approaches to raise the general awareness of the benefits of CRC screening, the Felix Burda Foundation manages to break the taboo and make the topic of CRC screening socially acceptable.
In March 2002, the Felix Burda Foundation together with partners called out the first “Colon Cancer Awareness Month” (“Darmkrebsmonat März“®) which since then has become an annual national action month in which doctors, clinics, local governments, stake holder in the particular field of cancer and the media participate. The campaign of the Felix Burda Foundation culminates in the Felix Burda Award Gala. At this event the engagement of individuals, organizations and the media in the promotion of colon cancer screening is rewarded with a trophy in the name of the name giver of the foundation, Christa Maar’s son Felix Burda who died from colon cancer in 2001 at the age of 33.
A new project of the foundation is being offered on the foundation’s patient platform www.darmkrebs.de (darmkrebs = colon cancer). It provides for patients who visit the platform the opportunity to receive a qualified second opinion of an interdisciplinary tumor board of one of the German cancer centers regarding the treatment of their disease. The transport of the data is organized via an electronic patient file. The reason behind this is that many colorectal cancer patients are not treated in cancer centers but in small hospitals where they often do not get a treatment according to the scientific guideline.
President of the Network Against Colon Cancer Following an initiative of the Felix Burda Foundation the charity Network Against Colorectal Cancer was established in 2004. It consists of gastroenterologists and representatives of all stakeholders who are active in the field of colorectal cancer and the prevention of this disease, i.e. scientists, clinicians, and representatives from different fields of public health care, including politics and public health insurance. The aim of the network is to enhance the translation of knowledge into practice. It therefore organizes workshops and symposiums on certain topics where a lack of information or a need of a joint effort had been stated.
“European Conference on Colon Cancer Prevention“ In May 2007 the Felix Burda Foundation, the German Network Against Colorectal Cancer and the International Digestive Cancer Alliance hosted the “European Conference on Colon Cancer Prevention“ in Brussels. Representatives from 28 European countries participated in the conference. The aim of the conference was to foster the priority of the establishment of national colorectal cancer screening programs on the health care agenda of the European Commission. The steering committee of the conference which consisted of well known experts of different European countries put out a Declaration of Brussels. (www.future-health-2007.com)
“Transatlantic Symposium: Putting knowledge into Practice – strategies to increase Colorectal Cancer screening and save more lives” In April 2009 the Felix Burda Foundation hosted together with the Jay Monahan Center, the German Network Against Colorectal Cancer and the International Digestive Cancer Alliance a Transatlantic Symposium in New York. The focus was on the practical implementation and best practice exchange of ideas and strategies about how to increase CRC screening participation. All experts signed the Transatlantic declaration. (www.transatlantic-symposium.com)
- 62 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Chair of the Hubert Burda Foundation Since 1999 the foundation serves as the umbrella organization for all non-profit activities of Prof. Hubert Burda.
Overcoming the barriers – Experiences with colorectal cancer screening in Germany Though colorectal cancer is one of the few tumour diseases which can be cured or even prevented through screening, the rates of people who participate in screening examinations remain low in most countries. Besides the lack of knowledge the key barriers are of a psychological kind. It needs a joint effort of the national healthcare institutions, medical associations, doctors, private organisations and the media to reach the different target groups. People have to be addressed from different sides and in different formats to overcome the psychological barriers, make them aware of the benefits of screening and enable them to make an informed decision for screening.
Population-based invitation schemes, company screening programmes and public media campaigns have been proven to be effective tools to raise the awareness of people and motivate them to undergo screening.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 63 - Marina Yannakoudakis MEP FACE Champion
B.Sc. (Hons.) in Government, Politics and Modern History (1979)
Diploma in Administrative Management (Distinction) (1980). MA in Education (2002)
Financial director of a travel company (1984-2008)
Chairman, Oakleigh Branch of the Conservative Party (2002)
Deputy Chairman of Chipping Barnet Conservative Association (2005- 2008)
Councillor, London Borough of Barnet (2006-2010)
- 64 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Dr. med. Lawrence von Karsa Coordinator, European Cancer Network Head, Quality Assurance Group, Section of Early Detection and Prevention International Agency for Research on Cancer (IARC), Lyon, France
Lawrence von Karsa worked in the US House of Representatives as a Congressional Page from 1969-1970. He studied biology, economics and management at Harvard College and graduated in 1975. He subsequently went to Europe on a Rotary Fellowship and was fascinated by the comprehensive, affordable and high quality health services provided by the German statutory health care system. He completed basic medical training at the University of Tuebingen in Germany in 1986 and received an academic degree in medicine from the University of Erlangen in 1996 for his thesis on cardiovascular risk factor screening.
His main current interest is in development and expansion of knowledge on cancer control through effective implementation of quality-assured cancer screening and prevention programmes, taking into account synergies with, and needs of other areas of socio- economic activity and the potential of improvement in cancer control to stimulate similar developments in control of other chronic disease. Current core activities overlap extensively with coordination of the European Cancer Network and are focussed on:
• Promotion of international collaboration and exchange of information on quality assurance of cancer screening and prevention programmes, particularly in the areas of status reporting, communication, evaluation, monitoring and accreditation/certification for breast, cervical and colorectal cancer screening
• Development and updating of quality assurance guidelines for breast, cervical and colorectal cancer screening, as well as facilitation of professional support for guideline implementation, primarily in high and medium resource countries
His most recent publications deal with the development of the European Guidelines for Quality Assurance in Colorectal Cancer Screening, and updates of the European Guidelines for Quality Assurance in Breast and Cervical Cancer Screening, as well as a report on the implementation of cancer screening programmes in the EU. The latter report shows that at current levels more than 500 million screening examinations will be performed in existing breast, cervical and colorectal cancer screening programmes over the next ten years.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 65 - Dr. med. Lawrence von Karsa Coordinator, European Cancer Network Head, Quality Assurance Group, Section of Early Detection and Prevention International Agency for Research on Cancer (IARC), Lyon, France
Abstract: Secondary Prevention - The Council Recommendation on Cancer Screening and promoting screening and early detection
Introduction In December 2003 the Health Ministers of the European Union unanimously adopted a recommendation on cancer screening. This Recommendation of the Council of the EU [1] spells out fundamental principles of best practice in early detection of cancer and invites Member States to implement national cancer screening programmes with a population-based approach and with appropriate quality assurance at all levels, taking into account existing European Quality Assurance Guidelines for Cancer Screening [2-4]. In 2007 a study was conducted by IARC in collaboration with the European Commission Directorate-General for Health and Consumers to assess the implementtation status of Council Recommendation [5]. Key results of the data collected in the study were subsequently reported by the European Commission to the Council of the EU, the European Parliament, the European Economic and Social Committee and the Committee of the Regions [6].
Methods In 2007 a questionnaire was sent to the 27 EU Member States. Data from two pan-European projects in the EU Health Programme were used to check plausibility and to supplement the data base: ECN (European Cancer Network) and EUNICE (European Network for Information on Cancer). Population statistics were obtained from EUROSTAT or from national sources, if more recent data were available. The final report [5, see also 6] was based on returned questionnaires and other information provided by official sources in all EU 27 member states by May 2008.
Results A large number of countries in Europe (N=22) with over 90% of the minimum target population were running or establishing population-based breast cancer screening programmes in 2007, a smaller number of Member States were running or implementing population-based cervical and colorectal cancer screening programmes (15 and 12 countries, and 51% and 43% respectively). At the reported levels, over 500 million screening tests will be performed in the EU over the next 10 years.
Conclusions The scale of current and foreseeable screening activities in Europe underlines the need for continuous improvement in the quality, effectiveness and cost-effectiveness of these extensive activities. Development and piloting of an EU-wide accreditation/certification scheme mandated by the Member States and based on EU quality assurance guidelines would encourage programmes throughout the EU to take the initiative to continuously improve performance and would help consumers to recognise which services achieve the EU standards. Despite substantial efforts, less than half of the tests recommended by the Council of the EU are actually being provided, and what is more, less than half of these are in population-based programmes. However, the population-based approach is essential to implementation of comprehensive quality assurance as recommended by the Council. In order to make screening of appropriate quality, as recommended by the Council of the EU, accessible to all citizens who may benefit, additional efforts are required. Professional, technical and scientific support for quality assurance, monitoring, evaluation and accreditation is needed, as well as adequate resources, including expanded collaboration between Member States. Initial, important steps to address this issue will be taken in the European Partnership Action Against Cancer, by establishing a network of European Schools of Screening Management, and by examining barriers to screening participation.
- 66 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK 1 http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2003:327:0034:0038:EN:PDF 2 http://bookshop.europa.eu/is-bin/INTERSHOP.enfinity/WFS/EU-Bookshop-Site/en_GB/- /EUR/ViewPublication-Start?PublicationKey=ND7306954 3 http://bookshop.europa.eu/is-bin/INTERSHOP.enfinity/WFS/EU-Bookshop-Site/en_GB/- /EUR/ViewPublication-Start?PublicationKey=ND7007117 4 http://annonc.oxfordjournals.org/cgi/content/abstract/mdm481? 5 http://ec.europa.eu/health/ph_determinants/genetics/documents/cancer_screening.pdf 6 http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2008:0882:FIN:EN:PDF Financial support was provided by the European Communities: (grant no. 2004309, European Cancer Network; no. 2004114, European Network for Information on Cancer, and no. 2006322, European Cooperation on Development and Implementation of Cancer Screening and Prevention Guidelines).
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 67 - Jola Gore-Booth europacolon europacolon, the first Pan European Not for Profit organisation to focus on colorectal cancer was founded by Jola Gore-Booth in 2004. Fuelled by Jola's passion and vision europacolon has become a respected voice in Europe, working to prevent deaths and improve the quality of life and support for people affected by colorectal cancer.
Jola's vision for europacolon has grown from long-standing experience and an in depth understanding of the needs and challenges faced by people with colon cancer. She was Chief Executive of Colon Cancer Concern, a leading colorectal cancer charity in the UK (now known as Bowel Cancer UK) from 1998 until August 2005. In addition, she has worked alongside experts in the field as a participant in the UK Government's Bowel Cancer Advisory Board, NICE Implementation Advisory Board and Public Affairs Committee of the United European Gastroenterology Federation; she was also a member of the UK Bowel Cancer Screening Steering Committee.
A key focus of Jola's current work is to grow the network of patient group organisations and the number of European europacolon affiliates dedicated to colorectal cancer. She also tirelessly campaigns to ensure that governments and other stakeholders prioritise colorectal cancer and gives numerous presentations to raise awareness at conferences and meetings around the world.
- 68 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Anne Lee Schools for Health in Europe
Anne Lee has a degree in Behavioural Sciences and post graduate qualifications in health promotion and health education. Anne has worked in health for over 20 years at local, regional and national level. Focusing on areas such as health promoting in schools and mental health.
She is employed by NHS Health Scotland where she is Health Promotion Manager for Education, but is currently on secondment to NIGZ (Dutch Institute for health promotion and Disease Prevention) where amongst other things she is supporting and co-ordinating the SHE Network.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 69 - KEYNOTE:
COMMISSION’S COMMITMENT TO ACTION AGAINST CANCER
- 70 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Marisa Matias MEP and FACE Champion for Cancer Research
Marisa Matias is a Portuguese politician who is currently a Member of the European Parliament (MEP) in the Confederal Group of the European United Left.
For 10 years, she was a full-time researcher at the University of Coimbra.The title of her PhD: 'Is nature fed up with us? Health, environment and new forms of citizenship', which had a particular focus among other issues on cancer research.
Marisa Matias is a member of the European Parliament's Committee on Industry, Research and Energy, Committee on the Environment, Public Health and Food Safety, Delegation for relations with the Palestinian Legislative Council and Delegation for relations with South Africa.
She is the European Parliament Rapporteur regarding the prevention of the entry into the legal supply chain of medicinal products which are falsified in relation to their identity, history or source. She was the Rapporteur for the opinion from the ITRE Committee on Commission White paper: "Adapting to climate change: Towards a European framework for action». Recently, she has launched a written declaration with her colleagues (Jo Leinen, Michèle Rivasi, Herbert Reul, Antonyia Parvanova) on the need for increased coordination of cancer research in the European Union.
Academic Qualifications
• Desde 2004: Doutoranda em Sociologia na Faculdade de Economia da Universidade de Coimbra (SFRH/BD/17857/2004) • 2003: Mestrado em Sociologia, Programa “As sociedades nacionais perante os processos de globalização”, pela Faculdade de Economia da Universidade de Coimbra • 1998: Licenciatura em Sociologia pela Faculdade de Economia da Universidade Coimbra FORMAÇÃO COMPLEMENTAR
• Setembro de 2006 – PhD Course ‘Managing Science in Society”, com sessões orientadas por Michael Lynch (Cornell University), Steve Woolgar (Oxford University), Alan Irwin (Liverpool University), Finn Hansson, Julie Sommerlund e Maja Horst (Copenhagen Business School), Copenhagen Business School, Dinamarca, • Novembro de 2005 – Curso de Formação “Movimentos sociais, protesto público e cidadania”, coordenado por Prof. Doutor José Manuel Mendes e Prof. Doutor Elísio Estanque. Centro de Estudos Sociais. • Julho de 2004 - Curso de Formação “Organização da investigação: Novas dinâmicas e instrumentos”, coordenado pelo Prof. Doutor Tiago Santos Pereira. Centro de Estudos Sociais. • Outubro de 2003 - Curso de Formação “Ambiente, risco e participação”, coordenado pelo Prof. Doutor José Manuel Mendes. Centro de Estudos Sociais. • Outubro de 2003 – Curso de Formação “A globalização alternativa e as ONGs do espaço de língua oficial portuguesa”, coordenado pelo Prof. Doutor Boaventura de Sousa Santos, Centro de Estudos Sociais. • Junho de 2003 – Formanda da Oficina de Teatro do Oprimido realizada em Coimbra pelos Curingas (formadores credenciados do Centro de Teatro do Oprimido do Rio de Janeiro) Geo Britto e Helen Sarapeck.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 71 - John Dalli European Commissioner for Health and Consumer Policy
John Dalli served as a Cabinet Minister in the Maltese Government since 1987 having been first elected to the House of Representatives of Malta on behalf of the Nationalist Party in 1987. He has served as Parliamentary Secretary for Industry (1987-1990), Minister of Economic Affairs (1990-92), Minister of Finance (1992-1996, 1998-2003) Minister of Finance and Economic Affairs and Minister of Foreign Affairs and Investment Promotion (2004). Between March 2008 and February 2010, John Dalli served as Minister for Social Policy which includes the Health, housing, employment and industrial relations portfolio.
As a qualified accountant, Dalli has also worked in the private sector in Malta and abroad, both in industry and as an independent consultant.
In February 2010 John Dalli was appointed as European Commissioner responsible for Health and Consumer Policy.
John Dalli was born on 5th October 1948. He is married and has two daughters.
- 72 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK PARTNERSHIP IN CROSSING BORDERS - STRIKING A BALANCE BETWEEN POLICY FOR EXCELLENCE AND A POLICY FOR COHESION
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 73 - Miriam Dalmas Ministry for Health, the Elderly and Community Care, Malta
Current Occupation
Director Policy Development, EU and International Affairs, Ministry for Health, the Elderly and Community Care, Malta
Main activities and responsibilities
• Responsible to play a major role and/or assist others within the Ministry for the drawing up of policies in the areas of public health, health care services and long-term care and to promote the sustainable development of the Maltese health sector in line with service users’ and national needs and priorities. • Managing the Ministry’s participation in EU structures and processes, as well as ensuring effective co-ordination of all EU-related matters at a domestic level and with other EU stakeholders, including other Ministries, the Permanent Representation of Malta to the EU, the EU Secretariat within the Office of the Prime Minister and the Ministry of Foreign Affairs • Co-ordinating the formulation of the Ministry’s position on policies and pipeline legislation proposed by the EU including responsibility for information dissemination and consultation with local stakeholders • Ensuring compliance with obligations emanating from EU membership and membership in other International conventions and organisations • Proactively building and maintaining both bilateral and multilateral relationships with countries and organisations for the purpose of increased collaboration in the field of health; and • Acting as the Ministry’s reference point for the exchange of communication and adherence to bilateral or multilateral agreements or arrangements.
Work experience
• Acting Head Department of Health Information (DHI) • Head of the Malta National Cancer Registry • Senior House Officer at St. Luke’s Hospital, Guardamangia
- 74 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Maria Dalmas Ministry for Health, the Elderly and Community Care, Malta
Short address by co-chair to the Session on PARTNERSHIPS CROSSING BORDERS – Striking a Balance between policy for excellence and a policy for cohesion, at the ECPC Summit on the 13 October 2010
Health is central in people's lives and needs to be supported by effective policies and actions in Member States (MS), at EC level and at the global level. The EC's important role in health policy has been developing with the aim of supporting citizens' wellbeing, as well encouraging more cooperation amongst MS on health and health services
The way forward in this regard has been documented in the first EU Health Strategy – Together for Health: A Strategic Approach for the EU 2008-20131. This Strategy set out implementation mechanisms for cooperation between partners, reinforcing Health in All Policies, and increasing visibility and understanding about health at Community level. The EU Health Strategy is based on 4 principles which revolve around the adoption of shared health values comprising the overarching values of universality, access to good quality care, equity and solidarity.
Value can be added to Member States' action through fostering cooperation with stakeholders at Community level. A number of partnerships are being developed as exemplified by the European Partnership for Action against Cancer 2009-2013 (EPAAC)2.
This partnership approach was conceived to help to avoid scattered actions and the duplication of efforts. It will also contribute to the better use of the limited resources available.
A major aim is the development of guidelines for models of best practice in cancer-related care, taking into account national, regional and local contexts. These initiatives illustrate added value with respect both to achieve excellence by promoting and widely disseminating information on evidence-based services of high quality for implementation in all MS and also to achieve cohesion by providing guidelines for all MS to aim at the highest possible level of quality of care that can be provided. Other areas of EU added-value would be cooperation on European Reference Networks and in the collection of data and information enabling cross-national comparisons.
The proposed legislation on patients’ rights in cross-border healthcare is aimed at enabling patients from all over the EU to access safe and good quality treatment across borders. Closer and improved cooperation in health such as on eHealth and the Reference Centres are also the objectives of this new proposed Directive because it is believed that several common challenges can be best tackled by working together at EU level.
The concept of working in partnership with several stakeholders to gain ground over big health challenges has been accepted as a realistic and effective approach. The outcomes of the work achieved within such partnerships should be and are aimed at increasing both excellence and cohesion in the field. The above examples show that both excellence and cohesion can be addressed concurrently by several activities that have involved partnerships in the field of cancer. Striking a balance between policies for excellence and policies for cohesion is a realistic possibility provided our plans and implementation retain in view the principles of the EU Health Strategy and especially the shared health values of universality, access to good quality care, equity and solidarity.
1 Together for Health: A Strategic Approach for the EU 2008-2013 - COM(2007) 630
2 Communication from the Commission to the European Parliament, the council, the European Economic and Social Committee and the Committee of the Regions on Action Against Cancer: European Partnership – COM(2009)291
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 75 - Despina Spanou DG Sanco
Despina Spanou is since 1 April 2010, Principal Advisor to the Director-General for Health and Consumers. She works on policy and communication coordination and also co-chairs certain stakeholder fora, including the Platform for action on Diet, Physical Activity and Health and the High Level Group on Nutrition and Physical activity as well as the Alcohol and Health Forum. She also represents Directorate General for Health and Consumers at the High Level Forum on competitiveness in the food chain.
She was previously the Deputy Head of Cabinet for the European Commissioners for Health Mr. Kyprianou (2004-2008) and Mrs. Vassiliou (2008-2010).
Despina Spanou started her career at the European Commission's Directorate General for Competition after having practised European competition law for a number of years with the Brussels branch of a US law firm. She is a qualified lawyer and holds a Ph.D in European law from the University of Cambridge.
In 2004, she joined the Cabinet of Markos Kyprianou as Member and was nominated as Deputy Head of Cabinet in 2007. She maintained this position under Commissioner Androulla Vassiliou when she took over the portfolio of Health in 2008 through the beginning of the Barroso II Commission mandate. During her time at the Cabinet, she acquired significant experience through the handling of a wide range of DG SANCO policy issues, focusing in particular on the food chain, including, the handling of the avian flu crisis in 2006, EU trade relations with Russia, infringements of EU law in the area of health, biotechnology, as well as public health policy files including the first European Partnership on Action against Cancer and relations with third countries on health issues.
- 76 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Maria Chmelova National Health Information Center, Slovakia
Date of birth: 14 September 1948 Nationality: Slovak
Present position: Doctor in Psychiatrics and Public Health
Membership of professional bodies: Ø Slovak Association of physicians, Slovak Association of Psychiatrists
Professional experience (selection): 2009- 2010 National Health Information Center: Personal Health Record preparation in eHealth program implementation and epSOS an EU Cooperation with DG Sanco 12/2004 – 2010 National Health Information Center: Analyst – methodologist on drug abuses and drug addiction treatment information
02/2003 – 2010 Civic Association “Aid to the Children at Risk”: Counselor and Therapist
2006 – 2008 National Monitoring Center for Drugs, Office of the Government of the Slovak Republik
09/2004 - 10/2004 European Commission: Consultant of the EC in Afghanistan
08/2003 - 12/2004 State Public Health Authority of the Slovak Republic: Head of Department of the Intervention Counseling’s activities
10/2002 - 02/2003 University of San Diego, USA
Key qualifications: Ø Special Care specialist with emphasis on drugs addicts, alcoholics. Ø Expert in Public Health Ø Expert in Social Medicine Ø Experienced in international projects funded by the EU, the UN – Fight against drugs (drug abuse prevention, treatment and resocialization, legislation), eHealth Ø Experience in international teamwork in public health projects Ø Expert in Psychiatrics
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 77 - Patricia Garcia-Prieto Cancer Patient
Current Position Professor in Leadership and Personnel Development (Suez Chair) Solvay Brussel School of Economics and Management, Université Libre de Bruxelles, Belgium, September 2007 to date
Education Ph.D. in Psychology Faculty of Psychology and Education Sciences, the University of Geneva, Switzerland, 2004 Dissertation: “The influence of social identity salience on appraisal and emotions” Chair: Prof. Klaus R. Scherer, Committee: Prof. Guido Gendolla, Prof. Susan Schneider, Prof. Vincent Yzerbyt
Doctoral Program (Swiss National Science Foundation 3 years): "Stress and emotions at work and in social relationships", conducted in collaboration with the Universities of Geneva, Bern, Fribourg, and Neuchatel, Switzerland
Honors (Master Degree) in Psychology - Mention: First Class 3 School of Psychology, the University of Queensland, Australia, 1994 Thesis title: “Communication accommodation and social consequences: The influence of sex, ethnicity and organizational status” Chair: Prof. Cynthia Gallois
B. A. (Double Major in Psychology) School of Psychology, the University of Queensland, Australia, 1992 Thesis title: “Ethno-linguistic vitality of the Salvadorian community in Brisbane” Chair: Prof. Cynthia Gallois
Professional activities and services
Member: European Association of Experimental Social Psychology Society for Personality and Social Psychology Academy of Management
Ad-hoc reviewing: Journal of Personality and Social Psychology Group Processes and Intergroup Relations Journal of Organizational and Occupational Psychology Cahiers Internationaux de la Psychologie Sociale
Member of expert comity: Justice on line – project for webpage for the justice system in francophone Belgium http://www.justice-en-ligne.be/
3 In Australia the award of “Honours” is given to students who have achieved a higher level of performance in a fourth additional year to a typical Bachelor degree. First class (top 10% of the class) is the standard required for entry into a PhD or Masters by Research in Australia.
- 78 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK SHARING BEST PRACTICE IN HEALTH PARTNERSHIPS
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 79 - Josep Maria Borràs Andres Scientific Coordinator of the Spanish Cancer Strategy, Ministry of Health and Social Policy
JM Borras received his MD (1981) and PhD (1990) from the Autonomous University of Barcelona. He was trained as a public health physician.
He has worked for the Department of Health in cancer control and technology assessment in cancer (1988-1996) and was director of the Catalan Institute of Oncology (1996-2006).
He has been director of Cancer Plan of the Department of Health of the regional government of Catalonia (Spain) since 2006, Scientific Coordinator of the Spanish Cancer Strategy since 2008 and professor (public Health) at the Department of Clinical Sciences of the University of Barcelona since 2007. His main interests include the analysis of trends in cancer incidence and mortality, smoking related cancers and health services research in determinants of utilization of cancer care.
- 80 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Josep Maria Borràs Andres Scientific Coordinator of the Spanish Cancer Strategy, Ministry of Health and Social Policy
Abstract: National Cancer Plans –and Patient involvement
Cancer poses many challenges to the European health services; one of the most relevant is the need for coordinating the multiple health care professionals, hospitals and levels of care involved in dealing with the diagnosis and therapy of the cancer patient. A global approach is needed in order to cope with these challenges, and this approach usually has been the cancer plan.
Cancer plans are aimed at targets more comprehensive from primary prevention to palliation. The Lisbon round table organized under the Portuguese presidency in July 2007 offered what could considered the basis for action,4 in highlighting the need for an integrated cancer plan, which should include:
• Primary prevention and screening programmes, • Rapid access to diagnosis and multidisciplinary cancer care, • Focus on patient needs and inclusion of their preferences in their management, • Coordination of cancer care throughout the process from diagnosis to therapy, • Concentration of diagnostic and therapeutic procedures of low frequency or high complexity in services with adequate case load, • Adequate management of patients’ quality of life and provision of psychosocial care services, • Use of existing treatment guidelines, • Involvement of cancer patient organizations in strategic development and evaluation of the plan, • Evaluation of cancer outcomes, • Ensure support for research, • Ensure support for training of healthcare professionals and • Evaluate the performance of the plan itself.
There are more than half of the EU countries with a cancer plan,5 which in many cases are aligned with the objectives mentioned. One of the key points in assessing a cancer plan should be the way of involving the patients in its implementation. This is a relatively new development in cancer plans, although the involvement of patients’ organizations has been included in many of them as an essential component. The challenge now is to improve the skills of the health care professionals in this new framework and to promote a more active implementation of patients’ participation in clinical decision making. 6
4 Gouveia J, Coleman MP, Haward R et al. Improving cancer control in the European Union: Conclusions from the Lisbon round-table under the Portuguese EU presidency. Eur J Cancer 2008; 44:1457-62.
5 Bastos J, Peleteiro B, Gouveia J, Coleman MP, Lunet N. The state of the art of cancer control in 30 European countries in 2008. Int J Cancer 2010; 126:2700-15.
6 Tariman JD, Berry DL, Cochrane B, Doorenbos A, Schepp K. Preferred and actual participation roles during health care decisión making in persons with cancer: a systematic review. Ann Oncol 2010; 21:1145-51.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 81 - Simona Ene ECPC Vice President Sarcoma Patients Euronet (SPAEN)
Date of birth: 1964 December 29 Nationality: Romanian Education: “Transilvania” University of Brasov, Romania, mechanical engineer
Relevant information regarding experience in cancer patient groups: 2003 secretary Association of Cancer Patients (ABC) 2004-2007 Association of Cancer Patients (ABC) 2005-2007 Federation of Cancer Patients Association (FABC) 2006-2010 representative in Romania Global GIST Network 2007-2010 member of Board of Directors European Coalition of Cancer Patients 2008-2010 projects & programmes consultant Romanian Cancer Association, ‘Sharing same Destinies’ (breast cancer patient group) 2009- 2010 vice-president European Cancer Patient Coalition
Contribution to ECPC Board: • awareness on Eastern European cultural, behavioral and attitude differences in connection with cancer issues • up to date advise regarding membership, cancer policy in Romania, heath care policy • ECPC promotion to cancer patient groups in Romania and other events resulting in adding to membership 3 new member from Romania (‘Club of Bitrita Amazons’ Association, “Common Destinies” Group and Partners in Progress Association) and 1 new member from Georgia • recruiting one Romanian MEP in MAC • translation ECPC toolkit for election into Romania and other relevant documents as for many Romanian membership there is a language barrier • attending to round tables organized by sustaining partners • attending to all board meetings • granting my holiday to attend to ECPC board meeting, events and to represent ECPC to other events as speakers, because I have a full tine job
- 82 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Wim H. van Harten Director Organisation and Management, Professor Quality Management Health Care Technology (University of Twente)
Wim H. van Harten spent 7 years after his graduation as M.D. in tropical medicine. On returning from Cameroon, Africa he decided to focus on public health and health administration. He obtained a degree in community medicine while working as a chief medical advisor of a major health insurance company (1986-1992). As a chief executive officer in rehabilitation hospital “Het Roessingh” (1992-2001) in Enschede, he finished his Ph.D. on quality management (1997). In June 2001 he started as a member of the executive board of the National Cancer Institute - Antoni van Leeuwenhoek Hospital (NKI-AVL) in Amsterdam, The Netherlands, responsible for Organisation & Management. Since 2001 he is part-time professor on the chair “Quality Management of Health Care Technology at the department of Health Technology and Services Research of the School of Management and Governance at the University of Twente, the Netherlands.
Publications are in the field of needs assessment, outcome measurement & management, methodology and results of research into the effects of Quality management.
Full international contact details: Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital (NKI-AVL), Plesmanlaan 121, 1066 CX Amsterdam, the Netherlands. Tel.: +31 20 5122860. University of Twente, School of Governance and Management, MB-HTSR PO Box 217, 7500 AE Enschede, the Netherlands. Tel. + 31 53 4893825. E-mail address: [email protected]
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 83 - Wim H. Van Harten Director Organisation and Management, Professor Quality Management Health Care Technology (University of Twente)
Abstract: External evaluation systems - Measurements and Outcomes / c. Quality and volume of activity
Objective The validation of a designation system offers an exclusively OECI (Organisation of European Cancer Institutes) Accreditation Programme for each type of cancer institute and it creates a platform for synchronization and benchmarking of cancer institutes on an European scale.
Methods In the period from September 2009 till January 2010, the designation pilot project took place in which thirty-seven OECI cancer institutes participate. The aim of the pilot project was to design a decision schedule for designating cancer institutes. Four different types of cancer institutes will be distinguished: Cancer Unit, Clinical Cancer Centre, Research Cancer Centre and Comprehensive Cancer Centre.
Tree Model: • Total number of beds specific to oncology, • Number of ambulatory day care beds/chairs specific to oncology, • Number of specialists dedicated to oncology (FTEs), • Nmber of newly diagnosed cancer patients, • Total number of active clinical trials in the reported year, • Number of original scientific publications in peer reviewed journals, • Annual budget for cancer care, • Annual budget for cancer research.
Iterative Results By following the Designation Decision Tree Model the cancer institutes are designated in four types: • Research Cancer Centre (4 institutes), • Cancer Unit (8 institutes), • Clinical Cancer Centre (16 institutes), • Comprehensive Cancer Centre (CCC) (9 institutes).
The institutes applied in the Accreditation Programme also have different designation types. The designation type of these institutes is not yet defined due to the fact that the Designation Decision Tree Model is in the pilot phase. Hence, the applicant institutes in the Accreditation Programme are examined for all OECI quality standards while not every type of designation is expected to meet all the OECI standards.
Conclusion Designation is focused on quantitative data and accreditation is focused on quality. Both systems don’t exclude each other but rather complement or even strengthen each other. The designation type of cancer institutes indicates the comprehensiveness of the services within the organization and the degree of specialization; it is not a measurement on quality of the organization like in the accreditation programme. Therefore, the OECI Accreditation and Designation Group is working to integrate the Designation schedule and the Accreditation Programme. Currently, applying organizations in accreditation programme indicate their preference on their designation type according to their own interpretation. With the integration of the designation schedule it will be possible to validate the type of designation and the
- 84 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK accreditation can be made exclusive for that type of organization by eliminating quality standards that are not expected to meet in the type of institute. Additionally, designation could be a tool for cancer institutes to ensure and improve their quality standards. By putting effort in gaining a designation status the idea is that this will stimulate in disseminating knowledge and forming coalitions with other designated institutes. This allows cancer institutes to benefit from each other and reach to a critical mass in cancer services.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 85 - Sara Faithfull EONS
Sara Faithfull trained as a cancer nurse in 1986 at the Royal Marsden Hospital (UK) and has worked in many oncology-related fields including neuro-oncology, radiotherapy and urology. She was the recipient of the Smith and Nephew Nursing fellowship in 1991 and a CR-UK Nursing Research Fellowship in 1994.
She obtained her Ph.D. from the Institute of Cancer Research on Supportive care in radiotherapy and in evaluating the potential contribution of nurses. She has a range of research expertise which is multi method using both qualitative and quantitative approaches.
Research interests relate to supportive and rehabilitation cancer care centring on survivorship and radiotherapy toxicities. Broader interests are in defining and testing multidisciplinary clinical assessment, nursing interventions and evaluating innovative roles within the practice setting. Current funded projects are in self management of men with long term symptoms as a result of prostate cancer treatment, plus managing hormone therapy adverse effects on physical and emotional health. The cancer research team under Sara’s leadership are developing and testing e health strategies for cancer rehabilitation and nurse-led approaches to supportive care. She is particularly interested in developing an evidence base for supporting cancer patients in the transition through cancer therapy especially following completion of initial treatment into longer term follow-up.
Sara also works as a clinical academic seconded to West Sussex PCT as Macmillan Specialist Adviser for cancer as a chronic disease. This work is based at Midhurst community centre as part of the National Cancer Survivorship Initiative (NCSI) for cancer where she is mapping cancer services for men with prostate cancer and developing and testing services in conjunction with community care practitioners to support those with long term symptoms as a result of cancer.
As a Professor of Cancer Nursing Practice, Division of Health and Social Care at the University of Surrey (UK), she is responsible for academic management of cancer and palliative care courses within the Faculty. Teaching responsibilities include the supervision of Ph.D. students, Doctorate of Clinical Practice, MSc students and pre registration students. She is also Past President of the European Oncology Nursing Society (EONS) and Board Member of ECCO – the European CanCer Organisation.
- 86 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Sara Faithfull EONS
Multi-disciplinary teams: in sharing best practice in health partnerships
Sara Faithfull PhD, MSc BSc(Hons) RN Past President EONS: Professor of Cancer Nursing Practice, Faculty of Health and Medical Sciences, Surrey University, Guildford, UK email: [email protected]
Abstract Professional collaboration is clearly an important factor in improving communication and care within oncology in Europe. Changes in cancer policy and health care systems have impacted in some countries on how and who delivers cancer care packages and through these new drivers multidisciplinary teams have emerged as innovators in complex clinical networks. The increased use of ambulatory care and oral medication has shifted care from hospitals to the home where the provision of specialist care is often limited. Providing such supportive care requires translation across disciplines and care settings with multi-agency approaches to care and greater specialist nursing. These changes coupled with ever increasing demands in health care require a constantly developing and flexible health care workforce.
Often talk is of multi-disciplinary team approaches but this too frequently means physicians from differing treatment specialities, however in the true meaning of multidisciplinary team this includes allied health professionals and nurses bringing skills and knowledge from an array of areas. These not only help effectively to treat the cancer but provide the supportive care needed by the person throughout their cancer journey. There are pressures for changing the way clinicians work in modern health care and an increasing emphasis on team working. This paper explores the evidence for how effective multi-disciplinary teams are in improving cancer care and explores the barriers to wider implementation.
Overview:
1. Outline the role of policy in the development of multi disciplinary team (MDT) cancer care in Europe 2. Identify the evidence for benefits of multidisciplinary team care in oncology 3. Understand barriers within Europe to wider implementation of MDT 4. Reflect on interventions to improve MDT working.
References: Borrill C, West M, Shapiro D et al (2000) team working and effectiveness in health care British Journal of Health Care Management 8 364-70 Buljac-Samardiz M, Dekker-van Doorn et al. (2010) Interventions to improve team effectiveness: a systematic review Health Policy 94 183-195 Jones L, Leach L, Chambers S, Occhipinti S (2010) Scope of the breast care nurse: a comparison of health professional perspectives European Journal of Oncology Nursing 14 322-327 Faithfull S (2006) E. Milly L. Haagedoorn Lecture EACE (2006) Developing oncology nurse education and training across Europe. J Cancer Educ. Winter; 21(4):212-5. Fleissig A, Jenkins V, Catt S, Fallowfield L (2006) Multidisciplinary teams in cancer care: are they effective in the UK? Lancet Oncology 7 935-43
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 87 - Luzia Travado Clinical Psychologist, National Coordination for Oncological Diseases, Ministry of Health, Portugal
Clinical Psychologist, Psychotherapist (cognitive-behavior model)
Current Occupation: • Licenship in Psychology by University of Lisbon (1984) • Master of Sciences in Psychology, area of Psychotherapy and Health Psychology, by the University of Lisbon (2003) • Specialized in Psycho-Oncology and Palliative Care • Principal Assistant of Clinical Psychology, Chief of Clinical Psychology at Central Lisbon Hospital Centre – Hospital S. José, Lisbon, Portugal • Researcher and teacher of Psycho-oncology and Health Psychology • Advisor for the National Coordination of Oncological Diseases, High Commissariat of Health, Ministry of Health • Executive Board of International Psycho-Oncology Society (IPOS) • Member of Advisory Board of the I*CARE Program at MD Anderson Cancer Center, University of Texas, directed by Prof. Walter Baile • Co-Chairperson of the PAM Committee of the European Burns Association • President of Viva Mulher Viva Association (BC Association)
Biography: Luzia Travado is clinical psychologist and psychotherapist, specialized in health psychology and psycho-oncology. She completed her studies at the University of Lisbon, Portugal in 1984 and is chief of Clinical Psychology at Central Lisbon Hospital Centre, Hospital S. José, where she begun her career and has pioneered psychosocial programs for chronic patients due to trauma (e.g., severe burns) or disease (including cancer) since 1985. She teaches psycho-oncology for graduated students and communication skills for cancer care professionals, and has coordinated post-graduation courses in Psycho-Oncology and Palliative Care (2003-2007) at Independent University in Lisbon. She also supervises clinical practice of undergraduate and postgraduate students in Health Psychology since 1990. Dr. Travado collaborates in the Southern European Psycho-Oncology Study (SEPOS) and has published scientific papers. She serves as adviser for the National Coordinator for Oncological Diseases in Portugal, High Commissariat of Health (2007-) and has collaborated in the organization of the cancer round-table held in Portugal in 2007 during the Portuguese EU Presidency and participated in various EU meetings concerning cancer control in Europe since then. She has participated as specialist in psycho-oncology at the European Cancer Conference in Ljubljana under the Slovenian EU Presidency in 2008, and has also been invited by European cancer patients organizations to speak about Psychosocial Cancer Care. She has been nominated by the Health Minister to represent Portugal in the European Partnership on Action Against Cancer. She also served as director of the International Psycho-Oncology Society (IPOS) (2006-2010) and more recently the Executive Board (2010-).
- 88 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Luzia Travado Clinical Psychologist, National Coordination for Oncological Diseases, Ministry of Health, Portugal
TRAINING STRATEGIES TO IMPROVE PSYCHOSOCIAL AND COMMUNICATION SKILLS AMONG PROVIDERS
The psychosocial impact of cancer is well documented. Evidence shows up to 50% of patients develop difficulties with significant consequences, including treatment non-adherence, poor quality of life, difficulties managing pain and mental health problems including above average risk of suicide.
Multidisciplinary psychosocial care is now recommended good practice. Psychosocial therapies tailored to patient needs, reduce psychological problems and improve quality of life during and after treatment. They also improve re-integration to active life and rehabilitation in survivors. Despite this, psychosocial care services are not routinely offered to all European cancer patients. Referral and availability of care in Europe is inconsistent and, in some countries, scarce or absent (Reuben, 2004). This is despite health economics data indicating that patients denied access to multi-disciplinary care are increased users of health services with associated increased treatment costs.
European recommendations for best practice require a multidisciplinary team approach (including medical and non-medical specialists, namely patient-support staff specialized in psychological care) in order to attain the best survival rates and quality of life for cancer patients. In countries where comprehensive care for cancer patients has become a priority, psychosocial care recommendations have been proposed e.g. the National Institute for Health and Clinical Excellence (www.nice.org.uk) offers clinical guidance for improving supportive and palliative care and services for UK cancer patients (http://guidance.nice.org.uk/csgsp)
Good communication skills are a basic professional component of psychosocial care that can be taught and improved. Workshops for health-care professionals have a strong positive impact on clinical care (Fallowfield & Jenkins, 2004).
All Europeans should have equity of access to optimal cancer care to enable better quality of life, well-being, satisfaction with care, social adjustment and inclusion in wider society. The action proposed aims to survey service provision and training needs across Europe and plan the implementation of targeted training to skill up local teams who can then go on to provide further country / region-specific training. This approach should provide a cost-effective solution to disseminating out skills.
This will move us closer to ensuring that high-quality psycho-oncology services can be included in all comprehensive cancer care programmes and national cancer plans in Europe.
Grassi L.. Travado L. The role of psychosocial oncology in cancer care, in Responding to the challenge of cancer in Europe. Michel P Coleman, Delia-Marina Alexe, Tit Albreht, Martin McKee (eds). Slovenian Institute of Public Health, Ljubljana, 2008.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 89 - Roger Wilson Sarcoma UK & Sarcoma Patients Euronet (SPAEN)
Roger Wilson was diagnosed with a soft tissue sarcoma in 1999, with recurrences in 2000 and 2007. He has had three major surgical operations and has been treated with chemotherapy. In 2002 he began working with the UK's National Cancer Research Institute and was the patient on the NCRI Board from 2004 to 2007. He founded Sarcoma UK in 2003 as an information and advocacy organisation and working with contacts made through ECPC was a co-founder of Sarcoma Patients Euronet in 2009.
In the UK he is currently a member of the national Cancer Reform Strategy Advisory Board, a member of the steering group for the National Cancer Survivorship Initiative (NCSI), chairs the Advisory Board of the National Prevention Research Initiative, is a board member of CECo (a five-university research collaboration in supportive care), and works actively with the National Cancer Research Network on a range of issues including relationships with industry. He is an active advocate for sarcoma, working with NICE and similar bodies in Wales and Scotland on new technology appraisals.
In Europe he has been active with ECPC, with ECCO, and in supporting Conticanet - the research collaboration in sarcoma funded through FP6. He is a member of the faculty of the ECCO/AACR Workshop on Clinical Trial Methods held at Flims each year, and a full member of the Connective Tissue Oncology Society.
- 90 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Hedwig Verhaegen Flemish League against Cancer
Deputy Director Flemish League against Cancer (VLK) since 1998 Head of the study and advocacy department VLK Head of the information department VLK
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 91 - IMPORTANCE OF CANCER RESEARCH
- 92 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Henk Van daele ECPC Board Member
Languages: Dutch, French, English, German. Some elementary knowledge of Castilian.
Health problems in 1999: prostate surgery and male breast cancer (surgical treatment with axillary lymph node dissection, radiotherapy, endocrine therapy: 5 years tamoxifen + 3 years letrozole).
Career : Primary school teacher (1954-1957). Consultant “P.M.S.-Centrum Antwerpen” (1957-1961). Lecturer Teachers’ Training College, Antwerpen (1961-1972). Professor University Ghent (1972-1995) Member of the Belgian UNESCO Commission (1978-1998) Part-time professor Free University Brussels (VUB) (1981-1997) Visiting professor College of Europe, Bruges (1995-1996) Secretary (1977-1988) and president (1988-1992) of the "Comparative Education Society in Europe" (CESE) and editor of the CESE Newsletter (1978-1992). Member of the "Executive Committee" of the "World Council of Comparative Education Societies" (WCCES) (1988-1994) Membre du Bureau de l’ "Association francophone d'éducation comparée (1984-2003). Vice-président de l’ "Association francophone d'éducation comparée" (1994-2000).
As a cancer survivor I am participating in the activities of several cancer patients’ associations and advocacy groups, on local, national and international level.
My voluntary work is guided by the following principles: • No one should face cancer diagnosis and cancer treatment alone • Each cancer patient not only has the right to optimal diagnosis and treatment, including professional social and psychological care, but also, if he or she wishes, to talk to and be helped by an experienced and trained volunteer who has had the same cancer experience • Each cancer patient should be empowered to become a real partner in his/her recovery; this implies information and education of each patient; the objective is quality of life • The rights of cancer patients should be known and respected by all Europeans (doctors, nurses, patients, advocacy groups, etc.) • More cancer research on a European and even on a global level is necessary; • As responsible European citizens, and knowing that 1 out of every 3 Europeans will be diagnosed with cancer, we should all play an active role in health policy on a national and international level; “nothing about us without us!” • Being trained as a teacher and holding a PhD in psychology and education, I would like to stress the necessity for more and improved training, education, and lifelong learning for doctors, nurses, health journalists, volunteers of patients groups, members of advocacy groups, etc. • For each (cancer) patient, without any discrimination (gender, age, etc.), only the best (diagnosis, treatment, psychological and social care) is good enough.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 93 - Ruxandra Draghia-Akli, MD, PhD DG Research
Dr Ruxandra Draghia-Akli is Director of the Health Directorate at the Research DG of the European Commission.
Previously, Ruxandra Draghia-Akli served as Vice President of Research at Inovio Pharmaceuticals and VGX Animal Health. Dr. Draghia’s research activities have focused on plasmid design, gene expression and tissue-specific promoters/enhancers and sequences for the efficient expression of either secreted or intracellular proteins for gene therapy and vaccination. She is recognised as a global leader in the field of nucleic acid delivery for therapeutic and vaccination applications. She is an inventor on more than a hundred patents and patent applications. Throughout her career, Dr. Draghia has published numerous scientific papers and reviews in the areas of electroporation, plasmid components, growth and development, immune stimulation, vaccination, health, and well-being. She served as ad-hoc reviewer for granting agencies, annual meetings for gene therapy and endocrinology societies, and scientific journals in Europe and the USA. Dr. Draghia received an M.D. from Carol Davilla Medical School and a Ph.D. in human genetics from the Romanian Academy of Medical Sciences. Dr. Draghia also completed a doctoral fellowship at the University of Rene Descartes in Paris and a post-doctoral training at Baylor College of Medicine (BCM), Houston, Texas, USA, and served as faculty at BCM.
- 94 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Prof. Michael Baumann ECCO – European CanCer Organisation President
Michael Baumann graduated in medicine from the University of Hamburg, (Germany), and was then a Research Fellow at the Department of Radiation Oncology at the Massachusetts General Hospital, Harvard Medical School, Boston (USA). From 1990 – 1994 he was a Resident in Radiation Oncology at the Department of Radiation Therapy, University Hospital, Hamburg-Eppendorf during which time he set up a laboratory for Experimental Radiation Therapy.
In1995 he joined the Clinic of Radiotherapy and Radiation Oncology, Medical Faculty Carl Gustav Carus, University of Technology (TUD), Dresden (Germany) as Consultant Radiation Oncologist where he was also Head of the Section of Experimental Radiation Oncology and Radiobiology. He was appointed as Adjunct Professor of Radiotherapy in 1998.
He was appointed as Acting Director and Professor at the Department of Radiotherapy, the University of Saarland, Homburg (Germany) in 1999, and has served as Vice Director of the Clinic of Radiotherapy and Radiation Oncology at the TUD since the year 2000, and Director of the Experimental Center of the Medical Faculty since 2001. Michael Baumann also serves as Professor of Radiation Oncology, TUD, Director of the interdisciplinary University Cancer Center, and Chairman of the OncoRay-Center for Radiation Research in Oncology.
Author of over 200 publications, his work has been recognised through numerous academic awards and honours. He sits on several committees and has also served many learned societies such as the European Society for Therapeutic Radiology and Oncology (ESTRO) for which he was President from 2003-2007. He is currently President of ECCO - the European CanCer Organisation.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 95 - Prof. Michael Baumann ECCO – European CanCer Organisation President
Importance of Cancer Research – ECCO Perspective Despite the major advances in cancer research, potential is often hampered by fragmented efforts which impede the rapid translation of discovery into the clinic – a paradox that has become a frustrating reality for those working in or touched by cancer.
The harnessing and synergy of knowledge across disciplines and specialties, i.e. multidisciplinary cancer research within a tightly connected research continuum, is the single best way forward to advance translational cancer research and bring new developments more rapidly into clinical evaluation to establish benefits for patients.
The serious heterogeneities in research, funding, available technologies, patient treatment and care across Europe must also be tackled head on and, in partnership. Other considerations such as mobility of researchers and resources, the differing national legislative issues must also be assessed and addressed accordingly.
As a multifaceted and hugely complex disease, a coordinated approach to policy and priority setting at the national and European level is critical. In the current climate this has not yet been accomplished. Only in unison will we be able to positively influence oncopolicy and ultimately improve treatment and care of current and future cancer patients in and beyond Europe. Representing the interests of all stakeholders in oncology - not only those of the professionals through scientific cancer societies but also those of patient advocacy groups, cancer leagues, clinical cancer research organisations, ECCO – the European CanCer Organisation, leads a unique, all encompassing partnership dedicated to resolving the paradox and tackling the inequities in cancer research, treatment and care across Europe .
By promoting multidisciplinarity, stating the case for better supporting cancer research, advancing discovery through the organisation of scientific events of excellence, and providing the voice of consensus on European oncology, ECCO is well placed to lead and deliver on Work Package 8 of the European Partnership for Action Against Cancer.
- 96 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Rüdiger Hehlmann, MD University of Heidelberg
Rüdiger Hehlmann is a Professor of Medicine at the Mannheim Medical Faculty of the University of Heidelberg. Prof. Hehlmann is past Chief of Medicine at Mannheim, past President of the German Society of Hematology and Oncology, past Dean of his faculty and currently coordinates the German CML Study Group, the Competence Network on acute and chronic leukemias in Germany and the European LeukemiaNet. His research interests focus on leukemia.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 97 - Rüdiger Hehlmann, MD University of Heidelberg
Abstract: The Role of European Networks of Excellence
The only way to cure leukemia is by cooperative research. To optimize research the European LeukemiaNet (ELN) integrates 105 national leukemia trial groups and networks, 105 interdisciplinary partner groups and about 1000 leukemia specialists from 175 institutions. They care for ten thousands of leukemia patients in 33 countries across Europe. Their ultimate goal is to cure leukemia. Since its inception in 2002 ELN has steadily expanded and has made fragmentation of leukemia research in Europe an issue of the past.
The ELN grew from two major roots: 1) the German Competence Network on Acute and Chronic Leukemias and 2) the collaboration of European Investigators on Chronic Myeloid Leukemia (CML) (EI-CML).
ELN has improved leukemia research and management across Europe. Its concept has led to funding by the European Commission (EC) as a network of excellence. Other sources (European Science Foundation ESF; ELN-Foundation) will take over when EC-support ends.
- 98 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Dr. Johannes Bruns General Secretary of the German Cancer Society
1984 state exam mathematics and sports science 12/87 - 3/90 employee in the German Parliament (Bundestag) 1993 approval as a doctor of human medicine 12/92 – 11/93 department for surgery at the University of Bonn 12/93 - 6/98 department for trauma surgery at the University of Bonn 1998 specialist for surgery 1999 – 2006 head of the department of basic issues of medical care / services association of the employee health insurance (VdAK) e. V. since 10/2006 secretary-general of the German Cancer Society
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 99 - Dr. Johannes Bruns General Secretary of the German Cancer Society
Abstract: Role of Member States in Research
The Lisbon Strategy (also Lisbon Process and the Lisbon Agenda) is/was a special summit of the European leaders in March 2000 in Lisbon. The program aimed within ten years, until 2010, that Europe become the most competitive and knowledge-based economy in the world. In Germany this objective is also reflected in the political program during the government Schroeder. With this strategy, the EU wants to build a model of progress in the world.
In the field of research and development the Lisbon Strategy said, that the expenditure for R&D in every member state should be 3 % of the GNP. 2% should be covered by the business sector and 1% by the public sector. Since 2000 in most of the European countries both objectives never were reached. Data show, that also in the field of cancer we find the same results. Until today there is no common organized strategy in Europe. Research in cancer is primarily initiated by individual researcher or groups of researcher.
In 2003 for example the German government starts a special program to develop clinical trials. For the whole medical area every year 25 Million euro are expended. In addition 2008 the legislation in Germany starts to cover costs of drugs in investigator initiated trials by sickness funds. But until today the implementation is not successful.
The lack of clinical trials represents a bottleneck in the future not only in the German health care system. In every country central organizations like NICE in Great Britain or IQWiG in Germany were established during the last years as central boards for the decision process in health care. They use the results of high-quality trials as basis of their decisions but do not encourage clinical trials especially in Germany. That is not the spirit of Lisbon. Hopefully the program “Europe 2020” will be more successful.
- 100 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Prof. Ulrik Ringborg Director of Cancer Center Karolinska
Ulrik Ringborg is a Professor of Oncology, graduating from the Karolinska Institute in 1992. Since 1994 he holds the position of Director of the Cancer Centre in Karolinska.
Professor Ringborg completed his PhD thesis in basic biology 1971, graduated and received his State registration as a medical practitioner in 1972. 1974 he joined the Department of General Oncology at Radiumhemmet and became an Associate Professor of General Oncology in 1978 and qualified as a specialist in oncology in 1979. In 1992 he was appointed to Senior Consultant. Subsequently, he was appointed Professor of Oncology at the Karolinska Institute and Head of the Department of Oncology of Karolinska Hospital in 1992. In 1993 he became the Prefect at the Institute of Oncology-Pathology and held this position for three years. From 1996 until 2003, Ulrik was a Member of the Executive Group of the Karolinska Hospital and the following years 2003- 2004 served as the Head of the Oncologic Clinic at the new Karolinska University Hospital
He is a member of several committees, including Member of the Research Board and the Governing Body of the Stockholm Cancer Society, Member of the Research Board and the Governing Body of the King Gustaf V Jubilee Fund and of the Research Board and the Governing Body (Vice Chairman) of the Swedish Cancer Society. Moreover, he was a Member of the Scientific Advisory Committee of EORTC and at present member of the Steering Group of NOCI within the EORTC. He previously served as a Member of the Nobel Assembly from 1993 until 2008. He was the President of European Society of Skin Cancer Prevention (2002-2003) and the President of the Organization of European Cancer Institutes (2005-2008).
Professor Ringborg held numerous prestigious positions including Chairman of the Swedish Melanoma Study Group from 1976 to 2003, Chairman of the Investigation of Radiotherapy of Cancer from 2000 to 2003 at the Swedish Council on Technology Assessment in Healthcare and Chairman of the Development of National Guidelines for Cancer within the National Board of Health and Welfare (1998-2001).
He also was awarded Honorary Membership of the Radiological Society of North America and the Hungarian Cancer Society. Author of approx. 280 international publications, his scientific focus is on malignant melanoma.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 101 - Ulrik Ringborg Director of Cancer Center Karolinska
Abstract: Translational Research
Europe has a number of advantages as regards developing translational cancer research, yet there is no clear European strategy to meet the increasing burden posed by cancer.
The FP6 Eurocan+Plus project analysed the barriers underlying the increasing fragmentation of cancer research and stressed the need to improve collaboration between basic/preclinical and comprehensive cancer centres (CCCs), institutions in which care and prevention is integrated with research and education.
Furthermore, it proposed the creation of a platform of interlinked cancer centres with shared infrastructures and collaborative projects to facilitate rapid advances in knowledge, and their translation into better cancer care. In response to these challenges and in line with the call, EurocanPlatform will work towards the goal of decreasing cancer mortality by dealing with three main areas of strategic research: prevention, early detection and improved treatments. It will build the necessary resources and know-how for the entire research continuum: basic research, early and late translational research, clinical research, epidemiological research, implementation in care and population based outcome research.
There will be a strong focus on discovery-driven translational cancer research in five selected tumours: breast, head-neck, lung, malignant melanoma and pancreatic cancer. Joint structures and programmes for early detection will contribute to optimal treatment, and novel prevention research programmes will integrate prevention activities in clinical cancer centres as well as public prevention.
Collaborations will also include molecular pathway-driven clinical research supported by joint structures for omics, biobanking and biomarker validation to support clinical trials aimed at enhancing patient benefits by individualised treatments. EurocanPlatform is unique in its nature and represents a commitment from cancer centres to join forces and resources in order to fight cancer.
- 102 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Paolo Casali Istituto Nazionale Tumori
Paolo G. Casali, MD, medical oncologist, is Head of the Adult Sarcoma Medical Oncology Unit, Istituto Nazionale Tumori, Milan, Italy. He also serves as Secretary of the Ethics Committee of this institution.
Dr. Casali’s clinical and research activities focus on rare tumors, especially adult sarcomas, including gastrointestinal stromal tumors (GIST), and uncommon histological types. He is the Secretary of the Italian Sarcoma Group and is a member of the EORTC Soft Tissue & Bone Sarcoma Group. Dr. Casali chairs the Italian Network on Rare Tumors and acts as an Editor of START ("State-of-the-Art Oncology in Europe").
Dr. Casali is a member of the Executive Committee of the European Society for Medical Oncology (ESMO), where he also serves as Treasurer and Faculty Coordinator for Sarcoma. He is also a member of the Policy Committee of the European Cancer Organization (ECCO).
Dr. Casali received his medical degree in 1984 in Milan, and trained at the Istituto Nazionale Tumori. He is certified in clinical oncology and hematology, and has the ESMO certificate in medical oncology. Dr. Casali also teaches chemotherapy of rare tumors at the Milan University postgraduate school in Oncology. He has more than 100 peer reviewed authorships.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 103 - Ingrid Klingmann Chairman EFGCP
Dr. med. Ingrid Klingmann FFPM, FBCPM studied medicine in Germany and specialized in General Medicine, Clinical Pharmacology and Pharmaceutical Medicine.
After having joined pharmaceutical industry as medical advisor, she held senior management positions in different international contract research organisations and was responsible for operational, scientific, regulatory and business aspects of international clinical research projects from Phase I to Phase IV. Since January 2003 she has her own pharmaceutical development and site management support consulting company. From January 2004 to July 2007 she was also CEO of two investigative sites in London, UK, performing clinical trials in acute and chronic pain as well as musculo-skeletal diseases.
Dr. Klingmann is a founding member and currently Chairman of the European Forum for Good Clinical Practice (EFGCP) as well as Co-Chair of the EGAN/EFGCP Working Party “Patients’ Roadmap to Treatment”. She is Work Package Leader in the FP7-funded PatientPartner Project. She is a founding member and currently President of the Association for Applied Human Pharmacology (AGAH) in Germany. Dr. Klingmann chairs the clinical research module of the post-graduate Master in Regulatory Affairs Course at the University of Bonn, Germany, and leads the Diploma Course on Clinical Trial Practices and Management at the University of Basel, Switzerland.
- 104 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Kim Wever Project Officer of PatientPartner Project
Kim Wever is PatientPartner’s project officer at the Dutch Genetic Alliance (VSOP). VSOP is the Dutch umbrella organisation of about sixty national, disease-linked, parent and patient organisations, most of them concerned with genetic and/or congenital disorders.
Before joining VSOP she worked for the Dutch Organisation for Health Research where she used stakeholder consultations to develop the Dutch Research program on Cost-effectiveness Research. She holds a master in Biology specialising in Endocrinology and Organisation, Management and Entrepreneurship in Life sciences.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 105 - Kim Wever Project Officer of PatientPartner Project
Abstract: An active role for patients in clinical trials; PatientPartner project. When we think of the role of patients in clinical research, this might be limited to the thought of a patient being a ‘subject’ in a clinical trial. However, patients and patient organisations may have much more to offer. By using their experiential knowledge, patients have a potential role as partners in clinical research. A partnership between patients and patient organisations and the other stakeholders e.g. pharmaceutical companies and clinical researchers, will create new paradigms from which not only the patient will benefit, but also the quality, quantity and effectiveness of clinical research. PatientPartner is a 3-year FP7 project investigating, enforcing and advising on the role of patient organisations in clinical trials. It is managed by the Dutch Genetic Alliance (VSOP), the European Forum for Good Clinical Practice (EFGCP), the European Genetic Alliances' Network (EGAN) and the Genetic Interest Group (GIG). The PatientPartner project’s main goals are: • to make an inventory of the needs of patient organisations regarding their involvement in clinical research. • to identify and realise common points of action amongst all stakeholders through engaging in an active dialogue with patient organisations. • to establish a European Network for Patients Partnering in Research (ENPCR) which will support the greater involvement of patient organisations in clinical research. • the realisation of patient-centred guiding tools and recommendations on how to create a successful partnership in the clinical trials context.
The project has identified 5 levels of active involvement of patient organisations in clinical trials ranging from being an information provider to being the driving force behind a clinical trial. An European survey amongst 205 patient organisations showed that in Europe patient organisations are most active as information provider on clinical trials, being on where to find a clinical trial or where to find suitable patients to take part in clinical trials. Furthermore good practices of patient’s representatives in e.g. ethical review, protocol development and improving the informed consent process have been identified. Further interviews revealed that in general the public knowledge of clinical trials is absent and that patient organisations are in need of up to date information on where the opportunities are for their members to take part in clinical trials and for them to get actively involved in getting clinical trials. In the Regional European workshops that followed it was concluded that all stakeholders were open to explore the possibilities to work together to improve the clinical trials of the future. Patient organisations from their point of view of being to influence therapy development, informing their members better and being actively involved in guarding patient safety and rights and academic and clinical investigators from the viewpoint of how to make sure that there will be a sufficient amount of patients that will freely consent to take part in a clinical trial in the future as well as improving some of the inherent procedures of clinical trials like the informed consent procedure, information to patients and the clinical trial protocol.
- 106 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK UNMET NEEDS, INEQUALITIES AND INFORMATION
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 107 - Dr. Andrea Micheli Fondazione IRCSS "Istituto Nazionale Tumori”
Andrea Micheli graduated in Sociology in 1977 and specialised in Health Statistics in 1987. He took direction in Epidemiology since the year 2000, and position as associate professor in Sociology at the Faculty of Medecine of the State University of Milan and since 2005 he directs the Unit of Descriptive Studies & Health Planning at INT, the Fondazione IRCSS "Istituto Nazionale Tumori" in Milan, focussed on the promotion of local, national, European and International cancer control.
Micheli's focuses at glance are international population-based data comparison, quality and value increase of cancer statistics, improved access to epidemiological data in cancer information, translational research for health programmes and cancer control inequalities.
His curriculum includes national and international epidemiological studies in projects on cancer etiology survival, prevalence and cancer control in collaboration with major European and International institutes and networks.
Since the year 2001 he has the lead of the EU funded EUROCHIP projects for the definition, collection and use of cancer indicators in the EU.
He contributed to the work of the European Council Presidency's work by Portugal and Slovenia in 2007 and 2008, with the European Commission in the "Health in the European Union" publication and in the the Major and Chronic Diseases report for the cancer chapters, and in the creation of the EPAAC Joint Action starting in 2011. In 2009 he hosted the Third International Cancer Control Congress in Cernobbio in Italy in 2009.
Projects where Dr. Micheli was/is involved: • ORDET • EUROCARE • ITACARE • CONCORD • ELDCARE • EUROPREVAL • ITAPREVAL; • ESTIMATION OF CANCER PREVALENCE IN THE US • TUMORI IN ITALIA • CAREMORE • DYNAMO-HIA • EUROCHIP 1-2-3
- 108 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Dr. Andrea Micheli Fondazione IRCSS "Istituto Nazionale Tumori”
Abstract: The importance of cancer data & registries to understand the cancer burden (EUROCHIP)
Non-uniform application of scientific knowledge about cancer control is one reason for inequalities within the burden of cancer in Europe. The main purpose of the Cancer Information System in the European Union is to bridge the gap between cancer research and cancer control activities. A well-functioning cancer information system is vital to study the efficacy of cancer control actions: comparison of population-based outcomes allows a better understanding of which policies may be transferable to other countries.
The first European Cancer Health Indicator Project (EUROCHIP-1) was aimed to provide the ECHI programme with a list of indicators to monitor trends in cancer in Europe. In 2001, more than 130 experts from various fields of cancer research and policy (physicians, epidemiologists, health planners, etc.) and from all 15 Member States, participated in the development of a list of indicators. These were based on criteria such as reliability, comparability, ease of collection and national representativeness. The project produced a comprehensive list of indicators relevant to cancer control; describing cancer in terms of burden, prevention measures, standards of care and cure rates. The indicators were chosen to enable standardized comparisons within Europe. These would facilitate learning from best practice in order to lower cancer risk; provide optimal cancer treatment; prolong survival; optimize cancer patients’ quality of life; and reduce inequalities in the burden of cancer. The sources of information may be health surveys, cancer-screening programmes and mainly cancer registries: information in fact is much more widely available for cancer than for other diseases reflecting the long tradition of population-based cancer registries in most of European countries. Cancer registries should hold comprehensive records of patients diagnosed with cancer in their target population allowing the collection of epidemiological indicators such as incidence, survival and prevalence. Cancer registries in some countries cover the entire population; others cover only limited geographical areas. The European Network of Cancer Registries (ENCR) and the IARC produce cancer incidence estimates at national level while the EUROCARE project provides estimates of cancer survival. Relevant cancer registries were not yet been established in Greece, and Luxembourg and available epidemiological data are not easily comparable with data from other countries.
Each country requires to facilitate the work of population-based cancer registries: this implies both adequate funding and data availability, especially where data protection laws either prevent cancer registries from functioning or prevent their data being used for public health purposes.
References: Coleman MP, Alexe D-M, Albreht T and McKee M (eds.). Responding to the challenge of cancer in Europe. Ljubljana, Institute of Public Health of the Republic of Slovenia, 2008 EUROCHIP web site (available at: http://www.tumori.net/eurochip, accessed 21 September 2010). Milan, Italy, National Institute of Cancer.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 109 - Francesco De Lorenzo ECPC Board Member FAVO President
EDUCATION AND ACADEMIC CAREER 1962 Degree in medicine (110/110 cum laude), Università “Federico II", Napoli 1963 - 1969 Assistant Professor of Biochemistry, Medical School, Università "Federico II" 1968 - 1971 Associate Professor of Biochemistry, Medical School, Università "Federico II" since 1972 Full Professor of Biochemistry, Medical School, Università "Federico II"
EXPERIENCE ABROAD 1964 - 1966 Research Associate at the Laboratory of Chemical Biology, National Institute of Health NIAMD, Bethesda (USA), directed by Dr. C.B. Anfinsen. 1967 Visiting Scientist at The Weizmann Institute (Israel) directed by Michael Sela 1968 - 1970 Visiting Scientist at the Department of Biochemistry, University of California, Berkeley, (USA) Directed by Dr. Bruce N. Ames.
POLITICAL EXPERIENCE 1983 - 1994 Parliament member; minister of the environment; health minister
EXPERIENCE IN VOLUNTEER-BASED ORGANIZATIONS 1985 - 1993 President of the "Associazione Nazionale Lotta all'AIDS" ANLAIDS (Italian Association Against AIDS), Roma. since 1995 Chief of the Medical Staff for drug users’ rehabilitation programs at “Comunità Incontro” directed by Don Pierino Gelmini – Amelia, Terni – Italy 1996 - 2001 President of the Associazione Italiana Malati di Cancro parenti ed amici (AlMaC, Italian Association of Cancer Patients, their families and friends), Rome May 1999 Member of The UICC Roll of Honour (The lnternational Union Against Cancer) 2002 - 2003 Cancer patient representative for AIMaC since 2003 President of the Associazione Italiana Malati di Cancro parenti ed amici (AlMaC, Italian Association of Cancer Patients, their families and friends), Rome since 2003 President of the Italian Federation of Volunteered-based Cancer Organizations (F.A.V.O.)
- 110 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Isabelle Moulon Head of Medical Information European Medicines Agency (EMA)
Education: Qualified medical doctor from the University of Grenoble, France. Specialist in endocrinology and metabolic diseases. Post-graduate studies in nutrition, statistics and methodology.
Career to date: Worked as a clinical endocrinologist in hospital until 1987 and then joined the Directorate of Pharmacy at the French Ministry of Health. She worked for the pharmaceutical industry from 1992 to 1995 before joining the European Medicines Agency (EMA) in July 1995.
She was responsible for Scientific Advice until December 2000. She was appointed Head of Sector for Safety and Efficacy of Medicines in January 2001.
Since September 2005 she has taken up new responsibilities as Head of Medical Information. She co-chairs the EMA Patients' and Consumers' Working Party (PCWP), which is a permanent forum for the EMA to interact with patients and consumers, ensuring that there is ongoing dialogue on the issues that affect them the most.
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 111 - CLOSING SESSION:
FINAL CONCLUSIONS
- 112 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 113 - - 114 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Nothing About Us Without Us!
About ECPC Established in 2003, The European Cancer Patient Coalition (ECPC) is the voice of the European cancer patient community, uniquely representing the interests of all cancer patient groups from the major to the rarer cancers. It has been established to represent the views of cancer patients in the European healthcare debate and to provide a forum for European cancer patients to exchange information and share best practice experiences. With its motto “Nothing about us without us!”, ECPC represents about 300 patient organisations in 42 countries, including the 27 EU member states. ECPC is run and governed by patients with a Board of Directors that consists of 9 cancer survivors from 9 different EU countries.
Join ECPC We welcome all European Cancer Patient Organisations as members of ECPC. Membership is free, please contact us at [email protected] or visit the ECPC Website to download the application form: http://www.ecpc-online.org/members. Join us in the fight against cancer!
How to contact ECPC ECPC Websites ECPC Brussels Office http://www.ecpc-online.org Rue de la Loi, 26 http://www.forumagainstcancer.eu 1040 Brussels http://www.cancerpartnership.eu Belgium E-Mail: [email protected]