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Cancer Leagues Collaborating in Cancer Prevention and Control at the National andEuropean Level [ECL SGA 2017] [747456] - Operating Grant
Project abstract

The Association of European Cancer Leagues (ECL) is an NGO leading on cancer control actions at the European level since 1980. Represented by members in EU and non-EU countries, cancer leagues are the main resource for the public for cancer control information and services. As the only network exclusively for cancer leagues, ECL provides a unique platform for cancer leagues to share knowledge and experience. Prior to receiving operational grant funding, the running of ECL had been financed mainly by membership fees. The addition of EU co-financing since 2015 has allowed ECL to implement activities more effectively in line with our multi-annual strategy, leading to the progressive increase in activities across all 5 of our strategic goals, providing considerable EU added-value in the process. EU co-funding has enabled ECL to increase our work in cancer prevention, especially the promotion of the European Code Against Cancer (ECAC). This has led to the design of new communication tools to raise awareness amongst the general public; the creation of a youth ambassadors programme to improve dissemination amongst young people; and enhanced networking opportunities for leagues allowing them to share best practice and collaborate more efficiently. In 2017, ECL will continue to disseminate the ECAC, making efforts to measure and assess the impact of these activities. ECL will increase efforts to have explicit references to the ECAC in updated National Cancer Control Plans, and will place greater emphasis on the role of cancer leagues in promoting organised cancer screening programmes. ECL will continue its leading role in tobacco control by supporting the 2017 European Conference on Tobacco or Health (ECToH). ECL shall also launch a new task force on the crucial issue of equal access to medicines. This will complement ECL's ongoing secretariat work on behalf of the MEPs Against Cancer interest group of the European Parliament, and the Patient Support Working Group of ECL.

Summary of context, overal objectives, strategic, relevance and contribution of the action

Cancer is a leading cause of death worldwide and accounted for 8.2 million deaths (22% of all NCD deaths) in 2012. In Europe, the burden of cancer in Europe is growing at an alarming rate. In 2012, there were 3.45 million new cases of cancer (excluding non-melanoma skin cancer) and 1.75 million deaths from cancer. In the European Union, the estimated numbers of new cases of cancer were approximately 1.4 million in males and 1.2 million in females, and around 707,000 men and 555,000 women died from cancer in the same year. The actions implemented by ECL in 2017 covers the whole spectrum of cancer control, but pays particular attention to primary and secondary prevention through the promotion of the European Code Against Cancer and tobacco control advocacy.

The action seeks to deliver strategic added-value through the exchange of good practice, informing EU policy development and implementation through intelligence provided by cancer leagues on the ground; and fostering closer cooperation between cancer societies and relevant stakeholders to tackle common challenges arising from the growing chronic disease burden. The action contributes to the health programme goals “to promote health, prevent diseases and foster supportive environments for healthy lifestyles taking into account the ‘health in all policies principle’” through the active dissemination of the European Code Against Cancer; enhancing ECL’s leading role in tobacco control advocacy through the monitoring of the implementation of the tobacco control directive; and spreading innovative, prevention-focused actions through the organisation workshops and high-level events.

The overall objectives are:
• Monitor EU cancer prevention and control legislation and actions at the EU;
• Work towards a tobacco free Europe;
• Through the Patient Support Working Group (PSWG), explore patient issues among the member leagues for areas where ECL is able to formulate recommendations for use by leagues and at the EU level;
• Advocate for equal access to medicines for cancer patients through the ECL Task Force on access to medicines;
• Communicate and promote the implementation of the European Code Against Cancer in collaboration with member leagues.

Methods and means

Methods include
• Workshops and round-table meetings; online communication including social media; surveys and study visits for cancer leagues to learn from their peers.

Means include
• Further developing the work of the newly established task force for equal access to cancer medicines to actively address the problems that threaten the accessibility of cancer medicines;
• Secretariat function of the MEPs Against Cancer interest group of the European Parliament;
• Continuation of Patient Support Working Group (PSWG);
• Cooperation with nominated representatives of cancer societies for prevention and tobacco control issues;
• Collaboration with key stakeholders;
• Participation in EU fora and platforms such as the EU diet and psychical activity platform, EU expert group on cancer, and the European Commission Initiative on Breast Cancer (ECIBC).

Work performed during the reporting period

European Conference on Tobacco or Health (ECToH) - 23-25 March 2017, Oporto, Portugal
The 7th triannual ECToH conference was organised by ECL member the Portuguese League against Cancer in the city of Porto. ECL has the responsibility to ensure a member league organises the conference every three years, and participates in the main governance and technical committees of the Conference.
A seminar on the European Code against Cancer was organised by ECL during the conference, with presentations from 4 national member leagues of ECL.

Promotion of European Code against Cancer
ECL continued with the actions to disseminate the European Code against Cancer (ECAC) by organising workshops for cancer leagues, study exchange visits to leagues with best practice example of ECAC dissemination, and promoting the ECAC via social media.

ECL Patient Support working Group (PSWG) & ECL Access to Medicines (A2M) Task Force
Two PSWG meetings and accompanying site visits were held in Budapest and Copenhagen. Two meetings of A2M task force were held in Amsterdam and Copenhagen.

The main output achieved so far and their potential impact and use by target group (including benefits)

The Oporto declaration was produced as a result of the 7th European Conference on Tobacco or Health. The conference itself gathered more than 500 participants from the tobacco control community and received several high-profile keynote speeches including that of Queen Letizia of Spain, which generated significant interest in the media towards tobacco control advocacy. The 2016 Tobacco Control Scale (TCS) was also launched at the ECToH conference. The scale shows the better and under performing countries in the European region in regards to a series of important tobacco control measures. A new website for the TCS was launched in parallel to help bring the results closer to the target group to researchers and policymakers. A communication toolkit to aid stakeholders in their promotion of the ECAC. The toolkit contains the experience and intelligence gathered form the past three years of ECAC dissemination, and is freely available to download on the ECL website.

Achieved outcomes compared to the expected outcomes

A large multi-country survey to gauge the awareness of the European Code Against Cancer was performed in 2017. The survey covered a representative sample of 8.000 adults (aged 18+) from the 8 different EU countries. It summary, 13% of respondents have heard about the European Code Against Cancer, which is an increase compared with the benchmark established in 2015 (10%). This increase was in line with the expected outcome.

Several workshops and visits were organised on the communication of the European Code Against Cancer during the year with the more than 80% reporting that the knowledge disseminated were being actively used in their daily roles. More than 1000 copies of the 6th tobacco control scale report have been distributed since its publication at the European Conference on Tobacco or Health. A new website was launched to highlight the current and previous editions of the scale: http://www.tobaccocontrolscale.org.

Dissemination and evaluation activities carried out so far and their major results

A new website was developed for ECL, which was eventually launched in early 2018. The new website will be the primary dissemination tool for the outputs of ECL’s work. ECL monthly newsletters continued to published and widely read, in addition the social media presence on Facebook and Twitter was consolidate during the year. The Youth Ambassadors group organised a first “twitter chat” to discuss HPV vaccination, and produced a video to commemorate the 30th anniversary of the European Code Against Cancer, which has been viewed over 20,000 times.
The evaluation of the impact of the European Code Against Cancer was discussed in depth during a workshop on the European Code Against Cancer. The initial results from this workshop are to be discussed in depth during a meeting of experts in February 2018, with the ambition to develop a sustainable evaluation framework for the European Code Against Cancer. Local dissemination activities carried out by 5 cancer leagues supported by resources from ECL resulted in a broad impact, reaching more than 250.000 people.