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Cancer Leagues Collaborating in Cancer Prevention and Control at the EU and National Level [ECL OG 2014] [671365] - 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 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. The running of ECL is financed by fees from its members, which cover a skeleton staff and office expenses. ECL finds it increasingly difficult to run the office on only membership fees, rates which have not changed for 10 years, but due to times of austerity, ECL is unable to justify increasing the fees. Therefore, ECL is applying for this Operating Grant to increase its resources in order to be able to implement actions efficiently in line with its renewed strategy 2014-2017, in particular in its implementation of work for Strategic Goal 2: Promote Cancer Prevention. Cancer prevention actions, including communication campaigns for the public, remain a top priority for ECL and its member leagues, where we have been instrumental in communicating and interpreting for the public the past decade the 3rd Revision of the European Code Against Cancer. With great experience at the national and EU levels, and with proven trust of the public in the Member States, ECL and its member leagues are therefore a natural partner in communicating and disseminating the new (4th) revision of the Code. An EU Grant would be shared with the national leagues to further the other strategic goals: encouraging access to cancer screening; ensuring access to treatment and support; supporting national cancer control programmes and cancer registries; and influencing cancer control policies. More resources would also allow ECL to optimally utilize its network of partners at the European and global level, which include international organisations, the European Parliament, national departments of health etc. to support cancer control in line with priorities of the EU.

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

In line with an ageing population, 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 Europe.
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.
Whilst new treatments and therapies at an affordable price to health systems are to be encourage, it is essential that 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.
The action implemented by ECL in 2015 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.
As ECL is represented by members at the national level and often the main resource for the general public for cancer control information and services, ECL and its leagues are in a valuable position to improve national and European policies for cancer control.

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 implementation of the European Code Against Cancer among member leagues and across Europe.

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.

About ECL: 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

Methods and means

Methods include:
Workshops and round-table meetings; online communication including social media; surveys and site visits.

Means include:
Expansion of ECL secretariat to incorporate two new staff members; closer dialogue with existing ECL member leagues; and improved coordination of working groups (such as the patient support working group) and MEPs Against Cancer European Parliament interest group.

Work performed during the reporting period

The following activities represent the main areas of work performed during the action in 2015:

European Code Against Cancer workshop, Luxembourg (13 April);
ECL Patient Support Working group meeting, Limassol, Cyprus, (29-30 April);
Participation in EU stakeholder forums - Alcohol and Health Forum; Diet, Physical Activity and Health, Health Policy (year round);
CANCON Policy Conference, Committee of the Regions, Brussels (13 May);
Youth Ambassador workshop, Brno, Czech Republic (29-30 May);
National MEPs Against Cancer conference, Brno, Czech Republic (29-30 May);
World No Tobacco Day reception, European Parliament, Brussels (2 June);
ECL Patient Support Working group meeting, Belfast, UK (27-28 November)
European Code Against Cancer workshop, Belfast, UK (29 November)
ECL annual scientific conference (30 November)

In addition monthly newsletter were produced throughout the year, which updated on the ongoing work of the action, ECL’s commitments to the diet, physical activity and nutrition platform, and alcohol and health forum were renewed; and a public awareness survey on the European Code Against Cancer was performed.

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

The main outputs of the work have been:
Reports of the European Code Against Cancer workshop, including specific recommendations for improving the dissemination of the Code at the national and international levels;
Verification of the official translations of the 4th edition of the European Code Against Cancer;
Publication of the results of the public awareness survey conducted in five EU countries to assess the general awareness of the European Code Against Cancer;
Specific recommendations form the newly established youth ambassadors group on effective communication of public health messages to young people;
Reports on the national MEPs Against Cancer conference, the CANCON joint action policy conference; and ECL annual scientific conference.

The potential impact of the official translations of the European Code Against Cancer will be considerable, as these translations allow cancer leagues to spread the message of the Code widely in their national languages. This will allow the Code to be brought to a much broader audience than would have been possible if the Code was limited to just a handful of languages.

The results of the survey have a very important impact as they demonstrate that the current levels of awareness about the Code are quite low in Europe: approx. 10% had previously heard of the Code. This work will serve to act as a baseline against which future work to raise the visibility of the Code can be measured.

The potential impact of ECL’s actions as the Secretariat for the MEPs Against Cancer (MAC) is that there will be better policies for cancer control, specifically for the areas targeted by the MAC meetings with the aim of affecting policies, such as in the area of alcohol.

Similarly, the CANCON Policy Conference organised in May 2015, which focused on the issue of “Survivorship”, is expected to have increased awareness among policy makers and NGOs on the issues faced by cancer survivors. This includes “hidden” costs such as discrimination by insurance companies. Raising issues on survivorship potentially have wide societal implications by removing stigma and encouraging policies to support employers in their support for employees with cancer.

Achieved outcomes compared to the expected outcomes

European Cancer Code Workshops:
The workshops focused on exchanging experiences amongst cancer leagues active in the communication of the European Code Against Cancer. These workshops were successful in their outcomes as they demonstrated the current situation, and clearly indicated the priorities and interest of the cancer leagues for future workshops. The workshops were central to validating the official translation of the European Code Against Cancer into 22 further EU languages, which was a central achievement of the work in the first semester of 2015.

The outcomes differed from what was expected in that leagues preferred not to have uniform templates for dissemination, as flexibility to tailor existing practices to the local and national contexts. Overall, the workshops met the expected outcomes as the conclusions drawn provide a firm basis for the improved dissemination of the Code.

CANCON policy conference:
The CanCon policy conference was held in Brussels during May 2015 on the topic of “survivorship”. The conference itself was heavily oversubscribed with more than 85 people in attendance. The outcomes met expectations in that the survivorship work package of CanCon, in particular, received considerable recognition at the conference. In addition, high-level representation was provided from the European Commission, European Parliament, and European Committee of the Regions.

Youth ambassadors programme:
The inaugural meeting of the Youth Ambassadors group achieved the expected outcome of kicking-off the youth ambassadors programme and has provided sufficient momentum to maintain the programme during the ensuing months.

Youth Ambassadors have already proactively contributed to the ECL’s work by providing specific guidance on effective communication to young people. The outcomes have exceeded expectations in the degree to which a core group of the youth ambassador have actively contributed. The numbers participating were somewhat less than anticipated, but this shall be addressed in 2016.

The PSWG met twice in 2015: firstly in Cyprus to visit members leagues PASYAF and the Cypriot Anti-Cancer Society, and secondly in Northern Ireland, hosted by Cancer Focus Northern Ireland. These visits achieved their expected outcomes in that the majority of the PSWG members were present and participated in exploratory visits and interactive presentations on the leagues’ patient and family support work.

Access to treatment collaboration:
The access to treatment roundtable that was foreseen did not take place due to logistical reasons. ECL plans to follow up this work in 2016 under the auspices of the Dutch Presidency of the European Union.

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

ECL regularly informs its members and collaborating organisations on news of its work and relevant information from the EU. The more important dissemination and evaluation activities are outlined below:

Youth competition:
A youth competition was organised in 2015 to find a logo specific for the European Code against Cancer. The competition was successful in receiving a wide degree of interest from stakeholders, and in producing a logo that meets the initial objectives of the competition.

Participation in events:
ECL participated in a number of events during 2015 to promote the European Code Against Cancer. This included the European Public Health Alliance annual conference, Milan EXPO 2015, and meetings of the European Union Cancer Control Expert group. Participation at these events were critical for the broader dissemination of the European Code Against Cancer, and for connecting with stakeholders who may become allies in cancer prevention.

Virtual dissemination of ECL work:
New social media platforms were created in 2015 to promote the European Code Against Cancer. Central to this was the use of a dedicated twitter account which has now garnered more than 250 followers. Information has regularly been disseminated via ECL’s monthly newsletters and contribution to the regular newsletters of the CanCon joint action. In addition, ad-hoc press releases have been published to promote key newsworthy items.

Survey and results:
An online survey was undertaken in collaboration with YouGov to identify the baseline knowledge of the European Code Against Cancer in the general population in 5 European countries. The survey found that 10% of the population had previously heard of the Code, although this figure differed markedly between countries. These results will provide the baseline from which ECL will work to improve the general awareness and understanding of the European Code Against Cancer.

Internal survey of activities:
A brief questionnaire of the cancer prevention needs and interests of ECL’s members was conducted to understand the state of play in regards to the cancer leagues’ cancer prevention work, in order to assess whether the current work plan of ECL was suitable, and to orientate the future work of the association in regards to cancer prevention. The findings were discussed at an end-of –year teleconference with cancer prevention representatives to provide face validity. The results include:

The main target groups for prevention-focused work must be young people, but that the dissemination of the Code should be kept general not segmented further;
Health professionals were identified as a critical actor and more work must be done to collaborate with this group on cancer prevention issues;
The collaboration opportunities offered in 2015 are sufficient, however, emphasis should not be placed on developing heterogeneous templates for the communication, but to share experiences and offer resources for translating existing practice;
An early warning mechanism on important forthcoming topics should be implemented. For illustration, the news generated around the carcinogenic classification of Red Meat was identified as the type of relevant topic about which leagues would appreciate 'early warning'.