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 the EU and non-EU countries at the national level, leagues are often the main resource for the public for cancer control information and services. ECL provides a unique platform for cancer leagues to share specific know-how and experiences and is the only network in existence exclusively for cancer leagues. The running of ECL has been mainly financed by fees from its members, which cover a skeleton staff and office expenses. Prior to receiving co-funding in 2015 in the form of an Operating Grant from the EU, ECL's main source of income was membership fees, rates which have not changed for 10 years, but due to times of austerity, ECL has been unable to justify increasing the fees. ECL applied for an Operating Grant in 2014 to increase its resources in order to be able to implement actions efficiently in line with its renewed strategy 2014-2017. In 2015, the EU co-funding allowed us to increase our activities in the implementation of work for Strategic Goal 2: Promote Cancer Prevention. The grant has enabled ECL to increase our work in cancer prevention, and specifically in communicating the new 4th revision of the European Code Against Cancer in 2015, activities which included confirming translations of the Code, encouraging our members to communicate the Code, targeting young adults and incorporating the messages in all our activities including work at the European Parliament. In 2016 we will continue and expand these efforts with the Code as well as continue our normal and important activities such as tobacco control and patient support, while increasing our work at the national levels with our member leagues and other partners, which will include to a limited extent global partners during the World Cancer Congress in October 2016 in Paris.
Context: 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. Around one third of cancer deaths are due to the 5 leading behavioural and dietary risks: high body mass index, low fruit and vegetable intake, lack of physical activity, tobacco use, alcohol use. Therefore, whilst new treatments and therapies are a making a difference for improved health outcomes, it essential that the prevention of chronic diseases (such as cancer) receives greater attention and resources to motivate people to live healthier lives, and encourage governments to enact healthy policies to reverse the growing cancer burden. The actions implemented by ECL in 2016 covers the whole spectrum of cancer control, but pays close attention to primary and secondary prevention through the promotion of the European Code Against Cancer and tobacco control advocacy.
Overall objectives: 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; Communicate and promote the implementation of the European Code Against Cancer in collaboration with member leagues.
Strategic relevance: 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.
Contribution to health programme goals: 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.
Methods include: Workshops and round-table meetings; online communication including social media; surveys and site visits.
Means include: In 2016, ECL established a new "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; 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).
The following activities illustrate some of the key work performed during the action in 2016:
- MEPs Against Cancer - production of strategic Road Map to cover the remaining Parliamentary period;
- European Code Against Cancer Dissemination - two dissemination workshops held in Brussels and Lyon, for the benefit of ECL members; pilot "train the trainer" programme developed and run in Romania; European Week Against Cancer youth competition organsied with over 1000 participants;animated video for the European Code Against Cancer developed.
- Patient Support Working Group - two meetings of the group held in Barcelona and Paris; update of PSWG rehabilitation atlas.
- Access to Medicines - launch of new task force designed for ECL members to join forces to tackle the issue of equal access to cancer medicines.
- Tobacco Control - participation in several high level events and symposia on numerous tobacco control related issues; draft of the 6th report of the tobacco control ranking scale.
The main outputs of the work have been:
- Strategic Road Map for the MEPs Against Cancer (MAC) interest group of the European Parliament - this has been actively used by the beneficiaries of this document, namely Members of the MAC group to plan and organise meetings and related events of the group;
- Summary report and draft training programme of the pilot train the trainers programme for the dissemination of the European Code Against Cancer - this has bee used by the participants of the pilot event held in Bucharest in April 2016, and at subsequent local follow up meetings;
- Youth Ambassadors workshop report - the active participation of the group increased in 2016 and several independent events organised by the Youth Ambassadors have been held in 2016 at national and local levels;
- Reports of the workshops on the dissemination of the European Code Against Cancer - the workshop report captures the key learning and conclusions from the two workshops held in 2016 and have been disseminated to all ECL members and made publicly available online;
- An animated video of the European Code Against Cancer was produced and launched during the European Week Against Cancer - it has been disseminated widely across multiple social media platforms;
- A youth competition to design an infographic for the European Code Against Cancer was launched ahead of the European Week Against cancer - over 1.100 participants entered the competition, which was aimed at 8-18 years old;
- An atlas of rehabilitation programmes of ECL Patient Support Working Group members was updated and has been disseminated amongst the group, who use the atlas to compare existing in the field;
- A master-course on policy and advocacy at the EU level was developed and delivered in the run up to the 2016 World Cancer Congress in Paris - this resource was open to all registered participants of the Congress and supported those who participated in developing advocacy strategies;
- A local dissemination projects series was launched to provide small-scale support to leagues to help boost the dissemination of the European Code Against Cancer;
- A series of site visits were conducted in 2016 to ECL members to learn more about their cancer prevention activities. A report of these visits was produced as an outcome.
The achieved outcomes were mostly in line with what was anticipated at the outset of the strategic grant agreement. In certain areas, the outcomes exceeded expectations, for example: the participation and reach of the European Week Against Cancer youth competition was more popular than anticipated, with 1130 participants entering into the competition. The pilot train the trainer programme that took place in Romania in April 2016 was very favourably evaluated by participants, who reported several instances of how they had used the training to improve cancer prevention activities. In contrast to the anticipated process, this evaluation was conducted 3 months after the training rather than 6 months, because this would encourage and support participants to build on the learning from the training. Likewise, the new microgrant programme launched by ECL in 2016, provided 8 cancer leagues with resources to boost their cancer prevention and European Code Against Cancer work, which was in excess of the figure anticipated from the outset of the action.
A large number of dissemination activities took place during the course of the action, including:
Joint event with Cancer Research UK, ECCO and SIOPE during world cancer day to highlight shared concerns in cancer control; High profile publication in cancer world magazine for specially commissioned infographic and article on the European Code Against Cancer; Specially designed animated video illustrating the European Code Against Cancer that has since been translated into all EU languages; High visibility for the work of the action, in particular the European Code Against cancer, during the launch of the Romanian National Cancer Plan; A large a number of actions throughout Europe during the European Week Against Cancer; 7 leagues supported with local dissemination projects to promote the European Code Against Cancer; Dissemination of cancer prevention materials during World Youth Days 2016, attended by 2 million young people and taking place in Krakow, Poland; Advocacy masterclass designed for the UICC World Cancer Congress in Paris.
Each activity was fully evaluated after completion and the feedback used to improve subsequent events. This was evident in the organisation of the European Code Against Cancer workshops, for which member leagues stated a need for greater discussion and sharing of current practice to disseminate the European Code Against Cancer. As a result, a larger number of leagues are disseminating the ECAC consistent with the recommendations determined by the action. This is particularity clear with the greater number of leagues focusing on promoting the European Code Against cancer as a coherent package of recommendation. The newly created access to medicines task force has already delivered results based on the founding declaration that has provoked governmental and key stakeholders to act. The advocacy masterclass of UICC was favourable evaluated, with the learning and educational outputs being put into practice by master course students and now open to other interested stakeholders.