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Final Report

CHAFEA Operating Grant Nr: 2013 31 03

Acronym: ED_FY2014

Title: EUROPA DONNA General Operating Grant

Authors: Paige Robinson and Susan Knox

Date: 27 February 2015

Final Report – CHAFEA Operating Grant

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Table of Contents - After finalising your report, please update the Table of contents (right click on the

table of content and select "Update Field") Table of Contents .............................................................................................. 2 Declaration by the operating grant coordinator ...................................................... 3 Specification of the action ................................................................................... 4 Acknowledgements ............................................................................................ 5 Final Publishable Executive Summary ................................................................... 6 Initial scope of the operating grant .....................................................................11

Mission and vision of the operating grant ..........................................................11 Summary of the organisation's work programme for 2013 ..................................12 Synergies of the organisation's activities with the priorities of the WP 2012 ..........13

Deliverables of the operating grant .....................................................................20 Deliverable 01: ..............................................................................................20 Deliverable 02: ..............................................................................................20 Deliverable 03: ..............................................................................................21 Deliverable 04: ..............................................................................................21 Deliverable 05: ..............................................................................................22 Deliverable 06: ..............................................................................................22 Deliverable 07: ..............................................................................................23

Deliverable 08: ..............................................................................................24 Deliverable 09: ..............................................................................................24

Deliverable 10: ..............................................................................................24 Operating Grant implementation.........................................................................25

Organization and planning ..............................................................................25 Evaluation .....................................................................................................43 Dissemination ...............................................................................................43 Participation in EU actions (if applicable) ...........................................................51

Further remarks ...............................................................................................53 Annexes ..........................................................................................................55


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Declaration by the operating grant coordinator I, as coordinator of this operating grant and in line with the obligations stated in the Grant Agreement declare that:

• The report represents an accurate description of the work carried out under this operating grant for this reporting period;

• To my best knowledge, the financial statements that are being submitted as part of this report are in line with the actual work carried out and are consistent with the report on the resources used for the project and, if applicable, with the certificate of the financial statement.

Name of the coordinator: Susan Knox, CEO, EUROPA DONNA .................................................................... Signature:

.................................................................... Date: 23 February 2015 ....................................................................


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Specification of the action Operating grant title: EUROPA DONNA Operating Grant Acronym:

ED_FY2014

Starting date of the grant agreement:

1 January 2014

Duration of the grant agreement (in months):

12 months

EC co-funding:

253,677 Euro

Priority area:

Generate and disseminate health information and knowledge (Renewal of an operating grant received under the Call for Proposals 2012)

Sub-action:

Exchange knowledge and best practice on health issues within the scope of the Programme

Action:

Exchange knowledge and best practice

Main partner information and contact person:

EUROPA DONNA – The European Breast Cancer Coalition Contact: Paige Robinson, Development Officer Email: [email protected]

Keywords (using MESH terms):

1. Breast cancer 2. Advocacy, patient 3. Healthcare quality assurance 4. Cancer early detection 5. Prevention


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Acknowledgements EUROPA DONNA wishes to acknowledge and express appreciation for the ongoing support of our Executive Board, our faculty members and scientific advisors for their generous contribution of time and effort on behalf of breast cancer advocacy. We would also like to commend our individual National Fora for their continuing commitment to our common advocacy goals, especially the implementation of the EU guidelines. The strength of our organisation emanates from our National Fora whose ongoing work and efforts are outstanding and become more impressive each year.


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Final Publishable Executive Summary This is a comprehensive summary of your operating grant. It should be formatted to

be printed as a stand-alone paper document - extending to a maximum of three pages- to reach a wide audience, including the general public. Kindly ensure that it is of suitable quality to enable direct publication by CHAFEA.

Please structure your executive summary as follows: - A summary description of the general and specific objectives of the operating

grant. - A description of the work done, including work-programme, evaluation and

dissemination activities. - The final results in terms of outputs and outcomes, and their potential impact and

use by the target group (including benefits). - The strategic relevance and contribution to the EU Health Programme. - Conclusions and recommendations. - Please include available diagrams or photos illustrating the work of the operating

grant. General and Specific Objectives of the Grant The EUROPA DONNA – The European Breast Cancer Coalition (ED) 2014 Work Programme focused on achieving its main organisational objectives: to ensure that all women in Europe have access to state-of-the-art early detection and treatment of breast cancer, and to ensure that all women are educated concerning breast health. Specific objectives of ED’s 2014 Work Programme were: To provide simple, clear and scientifically sound information that ED national groups (called Fora) could use effectively in their advocacy efforts of disseminating up-to-date breast health information to women and girls in their countries; To provide a forum in which members from a broad spectrum of European countries could learn from one another through the exchange of ideas, experiences and best practices; To produce and widely disseminate documents to ensure transfer of information; To promote healthy ways of life; To provide education and information from a) scientific experts who have broad and deep knowledge of breast cancer issues and b) advocacy experts with a successful advocacy track record who mentor ED members with the ultimate aim of overcoming inequalities by helping to bring every country to the level of breast health service described in the European Guidelines for quality assurance in breast cancer screening and diagnosis (EU Guidelines) and equalizing European women’s breast health knowledge The 2014 Work Programme In 2014, the ED Head Office carried out Work Programme projects in three main areas: education, information and advocacy. Our 46 European member countries were targeted with the following activities:

EDUCATION PROGRAMME: To most effectively fight breast cancer, ED seeks to encourage open communication and knowledge-sharing. To this end, we develop educational projects and organise conferences. In 2014, we held the following: Advocacy Training Course—this annual, intensive 2.5 day course on scientific aspects, EU Guidelines, Specialist Breast Units (SBUs), mammography screening, communication skills training, and capacity building, brings new advocates together to learn best practice; European Breast Cancer Conference (EBCC)—at


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this biennial conference (co-organized by ED, EORTC, & EUSOMA), 5,000 participants learn about the latest scientific advances on all breast cancer topics.

INFORMATION PROGRAMME: ED ensures that women have access to accurate, up-to-date information on breast cancer issues via its Organisational Website www.europadonna.org and publications/communications: A major ED advocacy initiative has been the publication of the Short Guide to the EU Guidelines. This booklet is crucial to our advocacy efforts at a national level, therefore we have implemented a major translation programme. In 2014 we translated the Short Guide into one new language, Slovenian, bringing the total to 18 language versions. We also translated our new Metastatic Breast Cancer Annex to the Short Guide to the EU Guidelines into Portuguese and Czech languages, bringing the total to three language versions. In 2014 we produced and widely disseminated the following documents to ensure transfer of information: Short Guide to the EU Guidelines translations, Electronic News (4 editions), Breast Health Day News, Proceedings from ED’s 2013 Pan-European Conference, ED Newsletter, ED’s 20th Anniversary Brochure, Annual Report & Financial Statements, Guide to Breast Health/For Your Breast Health, and Exploring the Role of Advocates in Breast Cancer Research. We also produced a seven-minute video that reviews the work ED has accomplished over the past 20 years and points out current challenges and work that needs to be undertaken to improve breast cancer prevention, diagnosis and treatment in the coming years. New ED member organisations were sent our membership toolkit. The Breast Health Day Website, www.breasthealthday.org, and ED’s Social Media Campaign—This unique prevention campaign is a yearly educational pan-European event using media, social networking and digital tools to widely disseminate information concerning the health determinants that strongly influence breast cancer as well as the importance of early detection through mammography screening programmes set up in accordance with EU Guidelines.

ADVOCACY PROGRAMME: In 2014 (and every year) ED represented the interests of European women to European institutions, bringing breast cancer issues to the attention of Members of European Parliament and the European Commission both directly and via expert meetings, conferences, information days, etc. ED additionally provided on-going input into new health strategies to ensure that breast cancer issues will be addressed and also positions itself to respond to drafts of legislation. ED’s Board and CEO attended many events as expert patient advocates. ED’s biggest advocacy success in 2014 occurred when on 3 October, the Parliamentary Assembly of the Council of Europe unanimously adopted the Resolution 2021 (2014) "Towards optimum breast cancer services across Europe," following intensive advocacy efforts on our part.

Forum Support Project—A committee of ED Board Members, the CEO and Head of Policy worked to help ED Fora find solutions to the issues they face. Evaluation Each year, ED conducts a general evaluation of its work programme and a specific one for each activity. In 2012/13 it also performed a Strategic Review which informed our formulation of a new Strategic Plan which went into effect in 2014. ED holds two major Board meetings each year, both involving an intensive review and evaluation of


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all priorities and activities. The CEO reports to the Board on the Work Programme and staff members review their activities and progress on projects.

Internal evaluation per activity:

ED Advocacy Training Course: Planning Evaluation—regular reviews, including time plans and quantifiable indicators, between ED CEO and ED officer responsible. The success and impact of the course are measured by two Event Evaluations.

Publications, Communications & Websites: In 2014 ED surveyed its members about the impact of the Information Programme using quantifiable indicators, their information needs and if those are met.

ED Short Guide to the EU Guidelines: Each translation is done, evaluated externally and then edited. Once published, users in the country are surveyed using quantifiable indicators to evaluate usefulness and impact after one year of use.

Forum Support: Forum Support is based on our assessment of an individual ED Forum’s need for support, or on their request for support. ED and its Board evaluate Forum Support and further reports come from other organisations and individuals in the country as appropriate.

In addition, for the 2014 Work Programme ED selected a Team of External Evaluators who conducted an evaluation of the 2014 Work Plan; this team comprised 2 Past-ED Board members who are breast cancer experts with experience of running large non-profit organisations. This team was complemented by one evaluation consultant selected as best value in a bidding process conducted by ED.

Dissemination Activities The primary method of results and deliverables dissemination to stakeholders and the broader public in 2014 was through ED’s websites, social media and publications.

ED distributed publications as widely as possible: by mail and/or email to all ED Fora, the ED mailing list, which includes all partners and institutions working on cancer and breast cancer related issues in the EU and internationally; distribute at ED events, conferences and events we attend and to MEPs and at European Parliament events. Information was also spread year-round through social media and through ED's Electronic News publication (four times per year).

The purpose of these dissemination activities is to provide accurate and up-to-date scientific information and best practice implementation information to advocates; to directly (through ED websites, social media and publications/communications) and indirectly (through ED National Fora) disseminate important breast health information and promote healthy ways of life to the women of Europe.

Final Results In carrying out our 2014 Work Programme we: 1) armed ED fora with accurate, up-to-date information and proven strategies to lead their countries in advocating for improved breast health services & directly educating women and girls in their countries about breast health, and 2) directly educated women about the importance of breast cancer screening, early detection, treatment in multidisciplinary Specialist Breast Units, breast cancer issues and services, and breast health. This will lead to the reduction of inequalities in services and public health knowledge and, ultimately, decrease mortality resulting from breast cancer and elevate prevention of the disease.

Strategic Relevance and Contribution to the EU Health Programme


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In terms of Health Information, we Exchange Knowledge & Best Practice in breast cancer advocacy with our network of 46 Fora as the essence of our work. Key to this is spreading information found in the EU Guidelines, which describe the breast cancer services women should receive; these therefore form the basis of what we are trying to achieve through our advocacy programmes. Our publication and translation of the Short Guide to the EU Guidelines are crucial in this effort. As the Breast Health Day messages we deliver annually are strongly focused on preventing breast cancer in women of all ages through lifestyle (the importance of maintaining healthy body weight, engaging in moderate exercise and moderating alcohol intake—Health Determinants) and are further spread on the local and national levels by member Fora, they contribute to CANCON’s (successor to EPAAC) Aim to Reduce the Incidence of Cancer by 15% by 2020. Before ED’s inception, all existing breast cancer advocacy movements in Europe operated exclusively at a national level and their activities were not all evidence-based. ED provides Added Value because it is an evidence-based advocacy organisation that gives breast cancer a European dimension, creating a network and facilitating the spread of pertinent, factual, up-to-date information among the different European countries and cultures, reducing inequalities and enhancing the power of action by European women to gain control of this disease (Smart Growth; Inclusive Growth). The ED Coalition stimulates initiatives to give the appropriate priority to breast cancer within European health issues while respecting the cultural differences between countries. In giving breast cancer advocacy a European evidence-based dimension, ED provides women in member countries with a strong sense of cross-border solidarity and the collective power necessary to bring about positive change on the large-scale (Sustainable Growth).

Conclusions and Recommendations Through its advocacy, information and education programmes, EUROPA DONNA—the European Breast Cancer Coalition armed women with knowledge and a powerful voice on breast cancer issues and services in 2014. Our work has already greatly impacted European public policy and legislation for the better, but we must continue to fight to attain the highest quality screening and breast care services for all women throughout Europe. By instituting best practices Europe-wide and spreading knowledge among women about how to work to prevent breast cancer through healthy lifestyle choices, we can significantly increase early detection and decrease mortality from the disease, and in many cases prevent the disease from occurring.

Stella Kyriakides, MP Cyprus, Council of Europe member and Past President of EUROPA DONNA, successfully putting forward a Motion for a Resolution at the Council of Europe on optimum breast cancer services.


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Advocacy Training Course 2014

ED President Elizabeth Bergsten Nordström speaking at EBCC-9

Reactions to the premiere of the EUROPA DONNA video production at EBCC-9


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Initial scope of the operating grant

Mission and vision of the operating grant MISSION: EUROPA DONNA—The European Breast Cancer Coalition (ED) is an independent, non-profit pan-European coalition of affiliated grassroots groups whose mission is to ensure that all women have access to accurate information and the highest quality breast cancer screening, diagnosis and treatment. We are widely recognised to be Europe’s breast cancer (BC) advocacy organisation, with 21 years’ experience advocating for evidence-based best practice breast services. VISION: ED provides critically important advocacy, education & information with the aim of:

1. Greatly INCREASING EARLY DETECTION and thereby drastically DECREASING MORTALITY resulting from breast cancer

2. Bringing QUALITY OF TREATMENT to the highest level for ALL women suffering from BC and thereby DECREASING MORTALITY resulting from the disease

3. Increasing PREVENTION, by promoting and educating all European women about healthy lifestyle practices

General objectives of the organisation and its main activities ED’s general OBJECTIVES are its 10 GOALS, based on the AIMS laid down in its CONSTITUTION (see ED website). Today, ED works to ensure that women are aware of EU Breast Cancer Resolutions of 2003 and 2006, and works toward the implementation of these resolutions and ensuring that breast cancer services are delivered in line with the EU Guidelines. ED pursues its objectives by developing advocacy programmes at European and national levels. In 2012/13 ED undertook a STRATEGIC REVIEW which led to the formulation of a new 5-YEAR STRATEGIC PLAN. ED’s 2014 activities followed that strategy. ED’s 2014-2018 Strategic Plan identified 3 major OPERATIONAL OBJECTIVES which we began to pursue in 2014: 1)Strengthen Europa Donna, 2)Strengthen Country Collaboration and 3)Maintain a Strong European Position. These operational objectives are addressed by ED’s on-going activities described below. Our CORE ACTIVITIES (vs. project) are those we consider to be ESSENTIAL to ED’s functioning and to the training of our advocates. EDUCATION Programme (Objectives 1-2) ADVOCACY TRAINING COURSE (Objectives 1, 2; CORE)—this annual, intensive 2.5 day course on scientific aspects, EU Guidelines, Specialist Breast Units (SBU), mammography screening, communication skills training, capacity building, brings New Advocates together to learn Best Practice; EUROPEAN BREAST CANCER CONFERENCE (EBCC) (All Objectives; EBCC preparation is CORE) —at this biennial conference (co-organized by ED, EORTC, & EUSOMA), 5,000 participants learn about the latest scientific advances on all breast cancer topics; ED PAN-EUROPEAN CONFERENCE (Objectives 1, 2; not held in 2014, CORE) this 2-day biennial conference responds exclusively to the needs of breast cancer advocates; ADVOCACY LEADER


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CONFERENCE (Objectives 1, 2; not CORE)—Leaders of ED’s National Fora meet for updates on advocacy topics geared toward an audience of experienced advocates and managing a national non-profit (held when needed, including 2014). BREAST HEALTH DAY (All Objectives; PROJECT)—This unique prevention campaign is a yearly educational pan-European event using media, social networking and digital tools to widely disseminate information concerning the HEALTH DETERMINANTS that strongly influence breast cancer as well as the importance of early detection through mammography screening programmes set up in accordance with EU Guidelines. INFORMATION Programme (All Objectives; CORE): ED ensures that women have access to accurate, up-to-date info on breast cancer issues via its WEBSITES and PUBLICATIONS/COMMUNICATIONS i.e. NEWSLETTER and BHD NEWS. We publish INFORMATION BOOKLETS on areas such as Clinical Trials and POLICY STATEMENTS on subjects such as genomics; we also issue conference proceedings. New ED member organisations are sent our MEMBERSHIP TOOLKIT. We SURVEY our members on breast cancer topics on an ad-hoc basis; results are reported in ED publications and at events. In 2014, we also released a short video production that not only reviews the work ED has accomplished over the past 20 years, but it also points out current challenges and work that needs to be undertaken to improve breast cancer prevention, diagnosis and treatment in the coming years. A major ED advocacy initiative has been the publication of the SHORT GUIDE TO THE EU GUIDELINES (All Objectives but especially 2; CORE). This booklet is crucial to our advocacy efforts at a national level, therefore we have instigated a major translation programme. To this end, in 2013 ED also produced and published the METASTATIC BREAST CANCER: Annex to the Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis, Fourth edition; this publication is a loose annex/supplement to ED's Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis covering metastatic disease as presented in the EU Guidelines. In 2014 we began a translation programme for the annex. ADVOCACY Programme: FORUM SUPPORT PROJECT (Objective 2; CORE)—a committee of ED Board Members, the CEO and Head of Policy work to help ED national groups find solutions to the issues they face. ADVOCACY PROGRAMME (Objectives 1, 3; CORE except for lobbying activities targeted at EU Institutions)—ED represents the interests of European women to EU institutions, bringing BC issues to the attention of MEPs & European Commission both directly and via expert meetings, conferences, Info-days etc. ED provides on-going input into new health strategies to ensure that breast cancer issues will be addressed and also positions itself to respond to drafts of legislation. ED’s Board and CEO attend many events each year as expert patient advocates.

Summary of the organisation's work programme for 2014, including a time table with the list of activities and events scheduled for the year 2014 ED’s 2014 Work Programme was focused on achieving its main organisational objectives: to ensure that all women in Europe have access to state-of-the-art-early detection and treatment of breast cancer, and to ensure that all women are educated concerning breast health. Many of the activities have been programmed repeatedly


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over numerous years, and consistently updated and improved to best meet organisational objectives. Specific actions in 2014, following ED's 2014-2018 Strategic Plan and Activities, and building on ED’s work plans of 2008-2012, are described below: (All activities described here are CORE. Not included are: BREAST HEALTH DAY and ADVOCACY LEADER CONFERENCE (project).) Activities, Methods and Means:

• Through the ADVOCACY TRAINING COURSE, EBCC, ED PUBLICATIONS/ COMMUNICATIONS and WEBSITES, we provided simple, clear and scientifically sound information that national Fora can use effectively in their advocacy efforts of disseminating up-to-date breast health info to women and girls in their countries

• Through ADVOCACY TRAINING COURSE, EBCC, ATTENDANCE OF MEETINGS WITH OTHER ORGANISATIONS IN THE FIELD, FORUM SUPPORT PROJECT, ED BOARD MEETINGS and GENERAL ASSEMBLY, we provided a forum in which members from a broad spectrum of European countries learned from one another through the exchange of ideas, experiences and best practices

• Through ADVOCACY TRAINING COURSE, EBCC and FORUM SUPPORT PROJECT we provided experts on important topics who have broad and deep knowledge of breast cancer issues and a successful advocacy track record who mentored ED members with the aim of overcoming inequalities by helping to bring every country to the level of breast health service described in the EU Guidelines and equalizing European women’s breast health knowledge

• We produced and widely disseminated the following documents to ensure the transfer of information: SHORT GUIDE TO THE EU GUIDELINES and MBC ANNEX, ELECTRONIC NEWS, BREAST HEALTH DAY NEWS, HIGHLIGHTS OF ED’s 11th PAN EUROPEAN CONFERENCE, ED NEWSLETTER, ED 20th ANNIVERSARY BROCHURE, ANNUAL REPORT & FINANCIAL STATEMENTS, GUIDE TO BREAST HEALTH/”FOR YOUR BREAST HEALTH”, EXPLORING THE ROLE OF ADVOCATES IN BREAST CANCER RESEARCH, SHORT VIDEO PRODUCTION

• We promoted healthy ways of life regarding breast cancer prevention through: OUR 2 WEBSITES and social media campaign, BREAST HEALTH DAY NEWS, ED NEWSLETTER, ELECTRONIC NEWS

Outcomes:

In carrying out our 2014 Work Programme we: 1) armed ED fora with accurate, up-to-date information and proven strategies to lead their countries in advocating for improved breast health services and directly educating women and girls in their countries about breast health, and 2) directly educated women about the importance of breast cancer screening, early detection, breast cancer issues and services, and breast health. This will lead to the reduction of inequalities in services and public health knowledge and, ultimately, decrease mortality resulting from breast cancer and elevate prevention of the disease.

Target groups: ED targeted our 46 member countries with these activities, giving special attention to countries that are experiencing difficulties through our FORUM SUPPORT PROJECT; thus, we aimed to bridge inequalities. TIMETABLE:

ACTIVITIES PERSON MONTHS


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RESPONSIBLE (M1=Month 1, January, etc.) European Breast Cancer Advocacy Training Course

Karen Benn Work done in M2,M3,M6-12; Course dates: 14-16 November

Preparation for European Breast Cancer Conference (EBCC-9)

Susan Knox Work done in M1-3; Conference dates: 19-21 March

Forum Support Project Susan Knox Work done in M1-12 Meetings – European breast cancer advocacy presence

Karen Benn Work done in: M1-12

Short Guide to the European Guidelines

Barbara Klein Work done in: M1-12; Slovenian translation published in September

Breast Health Day News Susan Knox Work done in:M1; M10-12 Published in January

ED Newsletter Susan Knox Work done in: M3-7, M9 Published in September

ED 20th Anniversary Brochure

Susan Knox Work done in: M1-3; Published in March

Annual Report Susan Knox Work done in: M1-4; Published in March

Financial Statements Susan Knox Work done in: M1, M11-12; Published in March

EDwebsite: www.europadonna.org

Daniela Pirisi Work done in: M1-12

BHDwebsite: www.breasthealthday.org

Susan Knox Work done in: M1-12

ED social media presence (Facebook, Twitter, YouTube)

Susan Knox Work done in: M1-12

ED General Assembly Susan Knox Work done in: M2-3; M9-10 Meetings held in March & October

Highlights of ED’s 11th Pan-European Conference

Susan Knox Work done in: M1-3; Published in March

ED Board Meetings Susan Knox Work done in: M1, M3, M9, M12; Meetings held in Jan., March, Sept.

Electronic News (4 editions)

Karen Benn Work done in: M1, M3, M9, M12; Published in April, July, Dec. (2)

Translations of MBC Annex to Short Guide to the European Guidelines into Czech & Portuguese (not previously scheduled, added with permission of CHAFEA)

Susan Knox Work done in: M1-7; Published in February and July

ED Guide to Breast Health/For Your Breast Health

Susan Knox Work done in: M1-10; Published October

Exploring the Role of Advocates in Breast Cancer Research

Susan Knox Work done in: M1-9; Published September

Short Video Production Susan Knox Work done in: M1-3; Published/aired in March

http://www.europadonna.org/

http://www.breasthealthday.org/


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Synergies of the organisation's activities with the priorities of the WP 2013 including a description of the EU added value of these activities ED’s work directly contributes to WP2014 priorities in several key ways. The essence of ED’s work lies in DISSEMINATING HEALTH INFO & KNOWLEDGE with regard to breast cancer advocacy through our network of 46 Fora. Key to this is spreading information found in the EU Guidelines, which describe the breast cancer services women should receive; these therefore form the basis of what we are trying to achieve through our advocacy programmes. Our publication and translation of the Short Guide to the EU Guidelines are crucial in this effort. ED constantly strives to IMPROVE BEST PRACTICE EXCHANGE regarding breast cancer through its meetings and conferences (EBCC, Advocacy Training Course, etc.) and through our Information Programme: ED advocates learn from each other, from guest speakers, and from ED literature and spread to stakeholders in their countries accurate, up-to-date information and proven strategies to educate women and girls about breast health and to advocate for improved breast health services. ED’s method of bringing patient advocates from different countries together to learn from one another also helps to PREVENT HEALTH INEQUALITIES and to ENSURE BETTER ACCESS TO HEALTHCARE. This in turn IMPROVES CITIZENS’ CAPACITY TO CONTRIBUTE TO SOCIETY and REDUCES POVERTY & SOCIAL EXCLUSION, thus contributing to the FLAGSHIP INITIATIVE AGAINST POVERTY. Our programmes also IMPROVE BEST PRACTICE EXCHANGE through the use of communication technology in the area of health. Breast Health Day was conceived as a web-based event, and an important way we reach women across Europe is through viral means, centring on our BHD website and informational video messages from scientific experts posted on YouTube, Facebook, etc. As the BHD messages we deliver annually are strongly focused on preventing breast cancer in women of all ages through lifestyle (the importance of maintaining healthy body weight, engaging in moderate exercise and moderating alcohol intake —COMMUNICATING NUTRITION AND PHYSICAL ACTIVITY) and are further spread on the local and national levels by ED member Fora, they contribute to EUROPEAN PARTNERSHIP FOR ACTION AGAINST CANCER’S AIM TO REDUCE THE INCIDENCE OF CANCER BY 15% BY 2020. These messages also help PROVIDE EUROPEAN ADDED VALUE THROUGH INCREASED WELL-BEING OF CITIZENS. Moreover, breast cancer prevention leads to LOWER HEALTHCARE COSTS. Breast cancer is regarded by many as a CHRONIC DISEASE regardless of whether it recurs since it can leave women with on-going health problems; our work addresses MULTI-MORBIDITY that often results from breast cancer. Because 70-80%* of breast cancer cases involve women over age 50, our work addresses the Commission’s emphasis on ACTIVE AND HEALTHY AGEING. 53-63%* of breast cancer cases occur before age 65; breast cancer thus affects many women during their years dedicated to working and raising a family. ED’s work therefore addresses the Commission’s assertion that PEOPLE’S HEALTH IS A KEY ASSET FOR SOCIETY AND FOR THE ECONOMY and A HEALTHY POPULATION WILL PLAY AN IMPORTANT ROLE IN ACHIEVING THE ‘EUROPE 2020’ TARGETS FOR SMART, SUSTAINABLE AND INCLUSIVE GROWTH.


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(*Statistics from: Report from the Commission to the Council, the European Parliament, the European Economic and Social Committee and the Committee of the Regions: Implementation of the Council Recommendation of 2 December 2003 on cancer screening (2003/878/EC). Brussels, 22.12.2008 COM(2998) 882 final.) Before ED’s inception, all existing breast cancer advocacy movements in Europe operated exclusively at a national level and their activities were not all evidence-based. ED provides ADDED VALUE because it is an evidence-based advocacy organisation that gives breast cancer a European dimension, creating a network and facilitating the spread of pertinent, factual, up-to-date info, reducing inequalities & enhancing the power of action by European women to gain control of this disease (SMART GROWTH: KNOWLEDGE & INNOVATION; INCLUSIVE GROWTH: FOSTERING TERRITORIAL COHESION). The ED Coalition stimulates initiatives to give the appropriate priority to breast cancer within European health issues while respecting the cultural differences between countries. In giving breast cancer advocacy a European evidence-based dimension, ED provides women in member countries with a strong sense of cross-border solidarity and the collective power necessary to bring about positive change on the large-scale (SUSTAINABLE GROWTH: PROMOTING EFFICIENCY).

Dissemination strategy (external dissemination) The primary method of results and deliverables dissemination to stakeholders and the broader public in 2014 and every year is through ED’s websites and publications (all with EU Health Programme disclaimer).

Purpose: To provide accurate and up-to-date scientific information and best practice implementation information to advocates; to directly (through ED websites, social media and publications) and indirectly (through ED National Fora) disseminate important breast health information and promote healthy ways of life to the women of Europe. Thus, the results and deliverables contributed to the overall promotion of the 2nd Health Programme. In addition, our work contributes directly to the European Partnership Action Against Cancer’s goals as our programmes address the identification and dissemination of good practice in healthcare.

How: ED distributes publications as widely as possible: by mail and/or email to all ED Fora, the ED mailing list, which includes all partners and institutions working on cancer and breast cancer related issues in the EU and internationally, e.g. EUSOMA, ECCO, EORTC, BIG, ECN, ESO, EPF, ED funders including the European Union, and upon request; publish on ED websites; distribute at ED events, conferences and events we attend, including: the ED Pan-European Conference (2015), ECCO/ESMO conferences, Milan Breast Conference, IMPAKT, ABC3 (2015), European Breast Cancer Advocacy Training Course, and to MEPs and at European Parliament events. Information is also spread year-round through social media including ED’s Facebook page, Twitter account, BHD videos on YouTube, and through ED's Electronic News publication.

When: Information and publications on websites are available throughout the year. Publications are primarily distributed as follows (and at meetings and events attended by ED): the Short Guide to the EU Guidelines and the MBC Annex are distributed throughout the year; BHD News in January; Highlights of ED’s 11th Pan-European Conference in March; ED Newsletter September; ED 20th Anniversary Brochure from March throughout rest of year; Annual Report and Financial Statements in March;


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Electronic News by email in April, July and December (2); Guide to Breast Health/For Your Breast Health in October; The Advocate’s Role in Research in September; ED Video Production premiered in March and can still be seen on YouTube.

Evaluation strategy Each year, ED conducts a general evaluation of its work programme and a specific one for each activity. In 2012/13 it also performed a Strategic Review which informed our formulation of a new Strategic Plan for years 2014-2018. ED holds 2 to 3 Board meetings each year, all involving an intensive Review and Evaluation of all priorities and activities. The CEO reports to the Board on the work programme and staff members review their activities and progress on projects. These written reviews are also made available to ED National Representatives and to stakeholders. In addition, ED holds a yearly General Assembly where activities are reviewed, evaluated and discussed.

Internal evaluation per activity:

ED ADVOCACY TRAINING COURSE: Planning Evaluation—regular reviews, including time plans and quantifiable indicators, between ED CEO and ED officer responsible. The success and impact of the course are measured by 2 Event Evaluations – each attendee completes an evaluation form in which there are quantifiable indicators for each presentation (Very Useful, Moderately Useful, Not Useful) and an overall assessment of whether expectations were met. There is also a Post-event Evaluation: each ED attendee must send an Evaluation, several months later, in which they describe advocacy activities and if/how the course helped achieve their objectives. Evaluation assessments are then produced and sent to ED Board and stakeholders as appropriate.

PUBLICATIONS/COMMUNICATIONS & WEBSITES: ED has 2 different levels of evaluation for publications; ED regularly surveys its members about the impact of the Information Programme using quantifiable indicators (Very Useful, etc.), their information needs and if those are met. We also periodically survey our stakeholders on our publications, websites etc.

ED SHORT GUIDE TO THE EU GUIDELINES: Each translation is done, evaluated externally and then edited. Once published, users in the country are surveyed using quantifiable indicators to evaluate usefulness and impact after one year of use.

FORUM SUPPORT PROJECT: Forum Support is based on our assessment of an individual ED Forum’s need for support, or on their request for support. Once Forum Support has started, the forum in question sends an evaluation of FSP success if appropriate; quantifiable indicators include # of new members recruited, new funding, number of new activities, etc. as a result of FSP depending on issues addressed. ED and its Board also evaluate Forum Support and further reports come from other organisations and individuals in the country as appropriate.

For the 2014 Work Programme ED selected a team of External Evaluators who conducted an evaluation of the 2014 Work Plan; this team comprised tWO Past-ED Board members who are all breast cancer experts with experience of running large non-profit organisations (Sema Erdem (Turkey) AND Ellen Verschuur (The Netherlands). This team was complemented by one evaluation consultant selected as best value in a bidding process conducted by ED. The external evaluation included quantifiable indicators for 2014 activities, i.e. On a scale from 1–10 (10 most


February 2015 18

positive), how do you judge the quality of x program in 2014?; Does x match the users' needs/ED goals?; Does x match ED goals?; How high is awareness in the BC community of x programme? Target to average 8 per activity.

Coordination with other organisations in the field ED works closely with: the WHO’s International Agency for Research on Cancer (IARC), European Cancer Network (ECN), the European Organisation for Research and Treatment of Cancer (EORTC), European Society of Breast Cancer Specialists (EUSOMA), Breast International Group (BIG), European Society of Medical Oncology (ESMO), European Reference Organisation for Quality Assured Breast Screening and Diagnostic Services (EUREF), European CanCer Organisation (ECCO), institutions of the European Community such as the European Commission, Joint Research Centre (JRC) and the European Parliament, at both committee and individual MEP level. With all of these partners we have worked to establish standards for early detection, diagnosis and treatment of breast cancer. Other partners with whom ED has collaborated on various projects include European Oncology Nursing Society (EONS), European Institute of Oncology (IEO), Europa Uomo, European Cancer Patients’ Coalition (ECPC). In addition, ED served on ABC2’s advocacy committee, conducted by European School of Oncology (ESO). ED was a founding board member of the European Patients’ Forum (EPF) where it remains an active member. ED was a collaborating partner of the EU-funded European Partnership for Action Against Cancer (EPAAC) and is a member of EPHA. Further, ED is currently partnering in CANCON (CANcer CONtrol), the EU’s new Cancer Joint Action project. Running from 2014-2016, this is the successor project to the European Partnership for Action Against Cancer (EPAAC). ED is a Collaborating Partner on three work packages of the CANCON project, focused on screening, survivorship and community cancer care. CEO Susan Knox, Board members, and Head of Policy/Public Affairs Karen Benn represent ED on numerous other ongoing projects: ED serves on the Steering Committees of the MINDACT, AURORA and OLYMPIA clinical trials; on Breast International Group’s (BIG) Scientific Committee as well as other working groups on research projects. Since 2001 Susan served as ED’s representative to the European Breast Cancer Network (EBCN), a collaboration that resulted in advocacy involvement in the development of the 4th edition of the EU Guidelines as well as a strong advocacy programme in support of population-based mammography screening as called for in the EU Guidelines. Susan and Karen have also spoken at a masterclass at the European School of Oncology. In addition, ED’s President through 2014, Elizabeth Bergsten Nordström, serves on the Early Breast Cancer Trialists’ Collaborative Group (EBCTCG). ED also participates in meetings with the European Commission in the new European Quality Assurance Scheme for Breast Cancer Services. With all of these collaborations and partnerships, ED has developed strong alliances with top scientists and other professionals in the fields of breast cancer, public health, health technology assessment, and many other important areas to draw from when we look for speakers at our various conferences, courses and events (all of whom do so without payment other than reimbursement of expenses) or when we need to access skills not found within ED for other activities. For example, recent speakers at


February 2015 19

ED events have included: Krzysztof Maruszewski, Director of the Institute of Health and Consumer Protection, European Commission, Joint Research Centre; Prof. Bettina Borisch, MD, MPH, FRCPath, Editor in Chief Pathobiology, Director and Acting Head, Office of the World Federation of Public Health Associations, Institute of Social and Preventive Medicine, University of Geneva; Dorothy Goddard, MD National Clinical Advisor Breast Cancer- The National Cancer Survivorship Initiative (UK); Giuseppe Curigliano, MD, PhD, Co-Chair, Division of Medical Oncology, European Institute of Oncology, Milan; and Professor Peter Dubsky, MD, Associate Professor of Surgery Medical University of Vienna, Department of Surgery. Furthermore, ED’s Fora make a strong contribution to our work by widely spreading evidence-based information and messages in their countries and advocating for best-practice services on the local and national levels. They also give important feedback to the ED Head Office on their annual and BHD activities which we publish, through responses to surveys and at ED events and by voicing their opinions and voting on various matters of importance at ED General Assemblies. ED National Representatives also frequently give formal presentations about their experiences in breast cancer advocacy at our events.


February 2015 20

Deliverables of the operating grant - Please fill the table for each deliverable in the grant agreement

Deliverable 01: Title of deliverable Breast Health Day News

Nature (e.g. report, book, website etc.)

Publication

Delivery date to CHAFEA 28 January 2014 (by email—hard copies followed by surface mail)

Specific remarks on this deliverable

This document provides an overview of the most recent Pan-European Breast Health Day campaign (2013) and reported on ED’s national groups’ Breast Health Day activities

Can the deliverable be published at CHAFEA's project database?

Yes

Deliverable 02: Title of deliverable ED 20th Anniversary Brochure


Publication

Delivery date to CHAFEA 28 March 2014 (by email—hard copies followed)


To mark our 20 years of European breast cancer advocacy, we published a four-page brochure describing our progress throughout the years, including conferences, publications, advocacy campaigns, websites, and landmarks in European policy. It also includes our future priorities and 10 goals.


Yes

Deliverable 03: Title of deliverable Highlights of ED’s 11th Pan-European Conference


February 2015 21


Publication

Delivery date to CHAFEA 28 March 2014 (by email—hard copies followed)


This document recounts the major points covered during the 11th Pan-European Conference, entitled “European Breast Cancer Advocacy: Ensuring Quality Services and Equal Access,” which took place in October 2013.


Yes

Deliverable 04: Title of deliverable Short Video Production


Video production

Delivery date to CHAFEA 3 April 2014 (by email—hard copies followed)


This seven-minute video not only reviews the work ED has accomplished over the past 20 years, but it also points out current challenges and work that needs to be undertaken to improve breast cancer prevention, diagnosis and treatment in the coming years.


Yes

Deliverable 05: Title of deliverable ED Annual Report and Financial Statements


Publication

Delivery date to CHAFEA 29 May 2014 (by email—hard copies followed)


ED’s Annual Report was first published in 2008 in an effort to make our activities transparent to all. In 2014, ED published an Annual Report and Financial Statements that summarize 2013 activities.


February 2015 22


Yes

Deliverable 06: Title of deliverable ED Newsletter


Publication

Delivery date to CHAFEA 29 September 2014 (by email—hard copies followed)


Our 2014 annual newsletter features coverage of key sessions from the 9th European Breast Cancer Conference, including the Manifesto on Pathology released at the conference. It also includes details of our advocacy activities at the European Parliament and our collaboration with other European organisations, as well as an article on a young woman living with breast cancer, reports from our member countries, among other topics.


yes

Deliverable 07: Title of deliverable Guide to Breast Health/For Your Breast Health


Publication

Delivery date to CHAFEA 28 October 2014 (by email and mail)


This brochure is designed to improve breast cancer awareness by disseminating information on lifestyle choices and their link to breast cancer.


Yes


February 2015 23

Deliverable 08: Title of deliverable Short Guide to the European Guidelines for

Quality Assurance in Breast Cancer Screening and Diagnosis


Publication

Delivery date to CHAFEA 11 November 2014 (by email—hard copies followed)


This is ED’s 32-page booklet summarizing the over 400-page EU Guidelines is our advocates’ primary advocacy tool. In 2014 we translated the booklet into Slovenian. Because we did not have another translation ready in 2014, we also translated our Metastatic Breast Cancer Annex to the Short Guide into Czech and Portuguese with permission from CHAFEA as part of this deliverable. The MBC Annex is a loose supplement to ED's Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis covering metastatic disease as presented in the EU Guidelines. (See below in “Changes” section for more information)


Yes

Deliverable 09: Title of deliverable Electronic News


Email publication

Delivery date to CHAFEA 24 December 2014 (4 editions); (by email—hard copies followed)


Included were sketches of projects and programmes ED is planning, engaged in, and recently finished. Electronic News editions also provided links to additional information and resources.


Yes


February 2015 24

Deliverable 10: Title of deliverable Exploring the Role of Advocates in Breast Cancer

Research


Publication

Delivery date to CHAFEA 28 October 2014 (by email—hard copies followed)


This was changed from our original plan with CHAFEA’s permission. Engaging in the breast cancer research agenda is an important aspect of ED’s new 5-year plan, and this booklet takes ED more deeply into the complicated topic. (See below in “Changes” section for more information)


Yes


February 2015 25

Operating Grant implementation

Organization and planning - Please provide a list and a description of the main activities implemented, as

much as possible in relation to the main aims of the 2013 Work plan - Please provide a summary of seminars, conferences and other events

attended, indicating the organiser, number of participants (possibly by country), date, etc.

- Please provide a list of travel & substance costs in connection with the implementation of the programme of activities

- Please describe changes to the original planning, which problems occurred and how did you solve them? (if applicable)

Core Activities Implemented in 2014 INTRODUCTION—AIMS AND OBJECTIVES ED’s 2014 Work Programme focused on achieving its main organisational objectives: to ensure that all women in Europe have access to state-of-the-art early detection and treatment of breast cancer, and to ensure that all women are educated concerning breast health. Qualitative internal and external evaluations conducted of ED’s 2014 Core Programming will show that we successfully: • provided simple, clear and scientifically sound information that ED national groups called Fora could use effectively in their advocacy efforts of disseminating up-to-date breast health information to women and girls in their countries • provided a forum in which members from a broad spectrum of European countries learned from one another through the exchange of ideas, experiences and best practices • provided experts on important topics who have broad and deep knowledge of breast cancer issues and a successful advocacy track record who mentored ED members with the ultimate aim of overcoming inequalities by helping to bring every country to the level of breast health service described in the EU Guidelines and equalizing European women’s breast health knowledge • produced and widely disseminated documents to pass on information • promoted healthy ways of life In carrying out our 2014 Work Programme we: 1) armed ED fora with accurate, up-to-date information and proven strategies to lead their countries in advocating for improved breast health services and directly educating women and girls in their countries about breast health, and 2) directly educated women about the importance of breast cancer screening, early detection, breast cancer issues and services, and breast health. In the longer term, this leads to the reduction of inequalities in services and public health knowledge and, ultimately, decrease mortality resulting from breast cancer and elevate prevention of the disease. ED targeted our 46 member countries (all of the current 28 EU member states and the Candidate Countries Iceland, Macedonia, and Turkey , plus 15 countries from outside the EU: Albania, Belarus, Kazakhstan, Moldova, Switzerland, Israel, Monaco, Norway, Ukraine, Russia, Serbia, Georgia, Kyrgyzstan, Uzbekistan, Tajikistan), giving special attention to countries that were experiencing difficulties.


February 2015 26

A Summary of the Execution of All Core Programme Tasks In 2014, the ED Head Office carried out projects and programmes in three main areas: education, information and advocacy.

EDUCATION

To most effectively fight breast cancer, ED seeks to encourage open communication and knowledge-sharing. To this end, we develop educational projects and organise conferences.

2014 EUROPEAN BREAST CANCER ADVOCACY TRAINING COURSE Only by training women from all our member countries will we be able to effectively advocate for current best practices at the national level. Central in this effort is providing advocates with the help they need to understand the EU Guidelines, a document published by the European Union which establishes best practice recommendations for high-quality screening, diagnosis and the setting up of specialist breast units in order to achieve the best possible medical practice and care throughout Europe. To address this need, ED conducts an intensive two-and–a-half day advocacy training course once per year, thus ensuring that we are constantly educating new advocates so that they can return to their countries with up-to-date, accurate information and implement effective breast cancer initiatives. Launched in 2001, this course is the single most important activity that we that we carry out and is unique in Europe. Furthermore, all speakers and trainers deliver instruction that is sensitive to the multi-cultural and multi-lingual audience. Open to two advocates who are nominated by their country’s ED National Representative from each member country, ED provides bursaries to cover participants’ subsistence travel and hotel costs so that all may participate. This course was held for 51 advocates in Milan, Italy from 14 to 16 November, 2014. The following topics were covered: Scientific Lectures / Advocacy Skills—Various medical experts covered such topics as the biology, diagnosis and treatment of breast cancer; epidemiology and risk factors of the disease; clinical trials; EU Guidelines; specialist breast unit guidelines; and mammography screening guidelines. Professionals discussed advocacy in Europe and provided an overview of European institutions involved. ED trainers provided one-on-one coaching in developing advocacy programs in individual country settings. Communication Skills Training Workshops—Developed and carried out by a professional consulting group, four facilitators conducted small group workshops teaching communication skills. The training included learning practical presentation skills and assertiveness techniques, and trainees were coached individually on handling various advocacy situations, including involving the media and politicians. Participants then role-played to practice these skills. Course Materials—A detailed course manual is developed each year and distributed to all participants (see ATTACHMENT 1 for a copy of course manual). Other important publications and materials that can be useful in advocacy work such as the EUROPA DONNA Short Guide to the European Guidelines were also distributed and discussed in 2014. Immediately upon conclusion of the course, ED conducted an internal evaluation of Advocacy Training. Results discussed below in evaluation section.


February 2015 27

PREPARATION FOR EUROPEAN BREAST CANCER CONFERENCE-9 (EBCC-9)

(see ATTACHMENT 2 for conference brochure/agenda).

In partnership with the European Organisation for Research and Treatment of Cancer (EORTC) and the European Society of Breast Cancer Specialists (EUSOMA), we hosted the 9th European Breast Cancer Conference (EBCC-9) in Glasgow, United Kingdom from 19-21 March. More than 3,300 breast cancer specialists and advocates attended sessions on topics ranging from the latest treatment and diagnostic methods to survivorship and the benefits of lifestyle interventions. We also supported the special EBCC-9 Manifesto Session “Optimal Pathology Should be Available in a Timely Manner to Every Breast Cancer Patient”, featuring the launch of a manifesto setting out optimal technical and organisational requirements for a breast cancer pathology service with a patient-centred focus. At the conference opening, our President at the time, Elizabeth Bergsten Nordström, presented the European Breast Cancer Arts and Humanities Award. Many of our board members and national representatives also chaired sessions and presented on topics ranging from the European Commission Breast Service Accreditation Project, which aims to set standards for breast services and specialist breast units across the EU, to metastatic breast cancer, breast cancer in young women, survivorship and prevention and lifestyle, among others. EBCC is unique in that it brings together all those concerned with breast cancer across Europe – researchers, scientists, physicians and advocates – to share best practice and the most recent advances in breast cancer research and clinical practice. Conference coverage is also provided in our 2014 newsletter. At EBCC-9, All ED Board members had roles chairing sessions or providing expert presentations on various topics.

Teaching at the 1st ESO Cancer Patient Advocacy Masterclass ED served on the Steering Committee and both Susan Knox, ED Executive Director, and Karen Benn, Head of Policy and Public Affairs, were faculty members for the first European School of Oncology (ESO) Cancer Patient Advocacy Masterclass entitled “Working towards stronger and more effective advocacy in Europe”, held in May in Baveno, Italy. The course, which included key leaders, CEOs and board members from 15 cancer patient organisations across Europe, covered topics such as strategic planning, using evidence for advocacy, involving patients in research, long-term sustainability and managing risks in NGOs. Susan gave a presentation on developing a strategic plan and Karen presented on advocacy involvement in research. Our President, Elizabeth Bergsten-Nordström, and board member Roswitha Britz also attended the Masterclass. INFORMATION PROGRAMME

Of paramount importance in our work, EUROPA DONNA facilitates the exchange and spread of vital information to the women we serve. All documents from our Information Programme are made available to the public on our websites (either http://www.europadonna.org/ or www.breasthealthday.org) and are distributed at various meetings and events ED hosts and attends throughout the year. Hard copies may be obtained by contacting the Head Office. In 2014, ED produced and distributed the following:



February 2015 28

EUROPA DONNA 2014 PUBLICATIONS/COMMUNICATIONS • DELIVERABLE 1: Our 4-page Breast Health Day News provided an

overview of the 2013 Pan-European Breast Health Day campaign and reported on ED’s national groups’ Breast Health Day activities. Breast Health Day (BHD) is an initiative launched by ED in 2008 that aims to widely disseminate accurate information on lifestyle factors that influence breast cancer and the importance of early detection through mammography screening programmes set up in accordance with the EU Guidelines. 1,500 were printed and distributed (approximately 1,000 were mailed to ED fora, Board members and ED stakeholders), the rest were distributed at meetings and upon request

• DELIVERABLE 2: We created a 4-page EUROPA DONNA 20th Anniversary Brochure to mark our 20 years of European breast cancer advocacy. It describes our progress throughout the years, including conferences, publications, advocacy campaigns, websites, and landmarks in European policy. The brochure also includes our future priorities and 10 goals. 4,300 were printed were distributed at meetings (particularly at EBCC-9) and upon request.

• DELIVERABLE 3: ED published the 16 page document, Highlights of ED’s 11th Pan-European Conference, which recounts the major points covered during the conference, which took place in Prague, Czech Republic in October 2013. Summaries of presentations include: Breast Service Accreditation delivered by Krzysztof Maruszewski, Director of the Institute for Health and Consumer Protection, European Commission, Joint Research Centre; Personalized Medicine and Current Research, delivered by Peter Dubsky, Associate Professor of Surgery, Medical University of Vienna, Austria; 10 Years of Screening in the Czech Republic, presented by Miroslava Skovajsova, Senior Consultant, Prague Breast Unit and President of the Association of Czech Breast Radiologists; Prevention Studies on Breast Cancer: what evidence shows, by Isabelle Romieu, Head of the Section of Nutrition and Metabolism, International Agency for Research on Cancer; Pathology: its growing importance and what patients should know, presented by Bettina Borisch, Professor, Institute of Social and Preventive Medicine, University of Geneva, Switzerland; Survivorship: identifying and meeting diverse needs on breast cancer survivors, by Dorothy Goddard, National Clinical Advisor on Breast Cancer Survivorship Initiative, Unite Kingdom; Breast Health Day Campaign, delivered by ED CEO Susan Knox, ED France and ED Switzerland; and an overview of the discussions in four advocacy workshops. 1,000 were printed and approximately 650 were mailed to ED fora, Board members and ED stakeholders); the rest were distributed at meetings and upon request.

• DELIVERABLE 4: The European Breast Cancer Coalition has produced a seven-minute video that debuted at a 20th anniversary reception we held at the conclusion of the European Breast Cancer Conference (EBCC-9) in March. This Short Video Production not only reviews the work ED has accomplished over the past 20 years, but it also points out current challenges and work that needs to be undertaken to improve breast cancer prevention, diagnosis and treatment in the coming years. It has been viewed more an 1,000 times on the ED


February 2015 29

YouTube channel where it is still available: https://www.youtube.com/watch?v=PUovz2RtoM8

• DELIVERABLE 5: This is a new initiative begun in 2008 in an effort to make

our activities transparent to all. In spring 2014 ED published an Annual Report and Financial Statements that summarise the previous year’s activities. Approximately 150 Annual Reports were printed and mailed to ED fora, Board members and ED stakeholders. Both the Annual Report and Financial Statements are posted on ED’s Website along with other ED publications

• DELIVERABLE 6: EUROPA DONNA’s Newsletter, the ED News, is published every summer for circulation in all member countries and includes information on ED’s priorities, plans, work and news; the latest research findings on breast cancer; updates on European-level meetings regarding breast cancer; interviews of leading experts in the field; news from ED member countries; issues regarding guidelines and lifestyle factors relating to breast cancer; and personal accounts of living with and surviving breast cancer. In 2014 the 20-page ED News featured Our 2014 annual newsletter features coverage of key sessions from the 9th European Breast Cancer Conference, including the Manifesto on Pathology released at the conference. It also includes details of our advocacy activities at the European Parliament and our collaboration with other European organisations, as well as an article on a young woman living with breast cancer, reports from our member countries, among other topics. 1,600 were printed and continue to be distributed (approximately 1,100 were mailed to ED fora, Board members and ED stakeholders), the rest are being distributed at meetings and upon request

• DELIVERABLE 7: In 2014 we also printed the new EUROPA DONNA Guide to Breast Health “For Your Breast Health” Brochure. This 4-page leaflet was published for Breast Health Day (BHD) 2014 and was posted on the BHD website and can be accessed from the ED website. It provides statistical information on breast cancer, describes the BHD campaign and provides recommendations for breast health, including physical activity, body weight and BMI, a healthy diet and mammography screening. ED fora are able to download this leaflet from the BHD website and translate it into other languages and print it in their countries. 500 were printed and were distributed at various meetings and at ED’s Advocacy Training Course in November.

• DELIVERABLE 8: The 4th edition of the European Guidelines for Quality

Assurance in Breast Cancer Screening and Diagnosis was published by the European Union in 2006. To assist in the achievement of this standard in countries throughout Europe and because this is a crucial document for our advocacy efforts, in 2007 we published a Short Guide to the European Guidelines. ED’s 32-page booklet summarizing in user-friendly language the over 400-page Guidelines had been published in 17 languages (including English) through 2013; it has become our advocates’ primary advocacy tool. In 2014 we continued translations into one more language: Slovenian.

Because we did not have another translation of the Short Guide ready in 2014, we also translated our Metastatic Breast Cancer Annex to the Short Guide into Czech and Portuguese with permission from CHAFEA as part of this


February 2015 30

deliverable. The MBC Annex is a loose supplement to ED's Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis covering metastatic disease as presented in the EU Guidelines. (See below in “Changes” section for more information) Short Guide Slovenian 1,600 printed and the vast majority were distributed to ED Slovenia; the rest continue to be distributed at meetings and upon request. MBC Annex translated into Czech and Portuguese are available at www.europeadonna.org; they have been printed by ED Czech Republic and ED Portugal.

• DELIVERABLE 9: A new initiative begun in 2013, ED periodically publishes an

exclusively electronic-version newsletter called Electronic News that is sent out via email to anyone wishing to subscribe (we currently have 800 people signed up). Topics include brief sketches of projects and programmes ED is planning, currently engaged in, and recently completed. When appropriate, links to additional information and resources will be provided. ED published four Electronic News editions in 2014. They were sent on the following dates: 16 April, 15 July, 3 December and 23 December and cover in brief numerous topics, including (to name only a few) session highlights from the 9th European Breast Cancer Conference (EBCC-9), Breast Health Day campaign 2014, information from meetings ED attended such as the European Commission Expert Meeting on Cancer Control, ESTRO and ESMO, the ED Advocacy Training Course in 2014 and ED’s participation in the Italian Health Ministry Conference, and an EU policy update.

• DELIVERABLE 10: Engaging in the breast cancer research agenda is an important aspect of ED’s new 5-year plan, and the booklet Exploring the Role of Advocates in Breast Cancer Research takes ED more deeply into the complicated topic. The topic of this booklet was changed from our original plan with CHAFEA’s permission. Engaging in the breast cancer research agenda is an important aspect of ED’s new 5-year plan, and this booklet takes ED more deeply into the complicated subject. See below in “Changes” section for more information. Topics include: how clinical trials work and what role advocates can play from the scientists’ perspective; ED’s role in the MINDACT trial and European breast cancer research; how advocates can contribute to research; questions for advocates to answer when considering a role or already engaged in a clinical trial; recommendations for advocates who become involved in the breast cancer research process; next steps for ED to engage its advocates in the breast cancer research process; ED’s research evaluation criteria. The booklet will be presented, discussed and a workshop was held on the topic at the ED Advocacy Leader Conference in September 2014 (the Advocacy Leader Conference is not part of Core programming). 1,000 were printed; the document was presented at the Advocacy Leader Conference and a workshop covered many of its points. It continues to be distributed

http://www.europeadonna.org/


February 2015 31

To make the aforementioned documents widely available, we posted them on the ED website or www.breasthealthday.org as appropriate and distributed them at various meetings and events throughout the year.

ABOUT ED’s WEBSITES AND WEB PRESENCE

Overview: EUROPA DONNA runs two websites, www.europadonna.org and www.breasthealthday.org, to provide a wealth of accurate and up-to-date information on breast cancer and breast health and to inform the public on our activities and work. On the organisational website (www.europadonna.org), we provide information on ED’s history, mission, work, policies and statements; all of our publications can be accessed and downloaded; previous and upcoming ED events and advocacy activities are described; articles by or about ED are posted; links are provided to ED country members’ websites and email addresses and to useful resources from other organisations. A new section on www.europadonna.org provides links to publications created by ED member countries to facilitate the sharing of materials between ED fora. Members are encouraged to use this space to share their publications for use and translations by other ED fora. Our Breast Health Day website was conceived in 2008 as an important piece of the annual BHD multi-media campaign, with the aim to disseminate information concerning breast health and to raise awareness of prevention and early detection of breast cancer among women and girls in Europe and across the globe. This site describes the purpose of Breast Health Day and previous BHD media campaigns at the European and national levels, it includes an interactive educational video, video messages designed to inspire women to make responsible daily lifestyle choices for their breast health, provides facts and statistics on breast cancer and breast cancer screening, and contains BHD campaign resources and press information that can be downloaded and used by anyone to help spread BHD’s messages.

2014 Breast Health Day Campaign Materials

Europe-wide • 15 October 2014 We celebrated the 7th annual Breast Health Day on 15 October. At the heart of the campaign was a fun, animated video which reached out to women of all ages, including young women. It encouraged them to “Take your first step for your breast health” by making healthy choices, and being careful to maintain a well-balanced diet and engage in physical exercise. The video was viewed over 54,000 times on our social networks and YouTube. In addition, in 2014 a total of 28 of our member organisations carried out Breast Health Day events in their countries, the details of which are posted on the campaign website www.breasthealthday.org. TWITTER 424.769 global Twitter reach FACEBOOK 2.639 fans 789.509 views of ED posts YOUTUBE 10.390 global channel views

7.996 people viewed the BHD video on YouTube






February 2015 32

Breast Health Day Campaign Materials Breast Health Day Video: The Breast Health Day animated video features cute characters making sensible lifestyle choices with the aim of encouraging women and girls around the globe to choose nutritious food and be physically active. Based on images, the video was created for easy use in all countries and to appeal to people of all languages. It ended with a frame with “For Your Breast Health” in 27 languages. Featured on the www.breasthealthday.com website in 2014 were:

Breast Health Day Pledge: As in previous campaigns, to get people actively involved in Breast Health Day and thinking about healthy lifestyles, women were able to share what they would do for their breast health using a web application on the Breast Health Day website and also spread it through the social networks. In all, 147 messages were added to a tag cloud. Breast Health Day Poster and Leaflet: The Breast Health Day poster and leaflet incorporated the characters from the campaign video and summarised the BHD message. Banners and Website Badges: Three banners and badge sizes were available for people to add to their websites to promote the BHD message. EUROPA DONNA’s activities could also be followed in 2014 (and 2015) through our Facebook page and Twitter account at http://www.facebook.com/EuropaDonna and http://twitter.com/BreastHealthDay. And in 2014 our recent BHD and other videos could (and can still) be seen on YouTube at http://www.youtube.com/BreastHealthDay.

ADVOCACY

MEETINGS—EU BREAST CANCER ADVOCACY PRESENCE

In order to continue to advocate for the cause of breast cancer at the European level we must be in a position to bring important breast cancer issues to the attention of the European Parliament and European Commission directly and through organisations such as European Patients’ Forum (EPF) and European Public Health Alliance (EPHA). This involves on-going research into various issues under discussion and providing on-going input into new health strategies that are underway to ensure that breast cancer issues will be addressed. As there are now an increasing number of initiatives such as the EU Joint Action on Cancer Control (CANCON), the successor to EPAAC, ED appointed Karen Benn first as Policy Officer in 2009 and then as Head of Policy/Public Affairs in 2012 to follow these along with the CEO. EUROPA DONNA, as Europe's breast cancer advocacy organisation, must be in a position to respond to drafts of legislation and to be present and have a voice in initiatives that are being developed. To this end, the meetings ED took part in during 2014 included:

http://www.breasthealthday.com/

http://www.facebook.com/EuropaDonna

http://twitter.com/BreastHealthDay

http://www.youtube.com/BreastHealthDay


February 2015 33

Developing a new European Parliament Written Declaration against Breast Cancer Our Head of Public Affairs, Karen Benn, has been working with members of the European Parliament to draft a new Written Declaration against breast cancer in the EU. The Declaration will confirm the resolutions of 2003 and 2006; it will address the needs of women with metastatic breast cancer (MBC), the implementation of specialist breast units by 2016, and the need to complete the accreditation protocol for breast cancer services. The launch will take place in the first quarter of 2015. This follows a roundtable meeting in February at the European Parliament where ED requested that both the new Written Declaration and the new European Commission Initiative on Breast Cancer (ECIBC) include specific reference and description of necessary services and support for MBC. European Commission Expert Group on Cancer Control meeting Our Executive Director, Susan Knox, attended the first European Commission Expert Group on Cancer Control Meeting held on 23-24 September 2014 in Milan, Italy, where the new 4th version of the European Code Against Cancer was presented. This group, representing patient organisations, national health ministries, international and European organisations of health professionals will work on key areas of interest to the cancer community over the next few years. Promoting the Council of Europe Resolution “Towards Optimum Breast Cancer Services Across Europe" The Assembly of the Council of Europe unanimously adopted the Resolution 2021 (2014) "Towards optimum breast cancer services across Europe", which was put forward by Stella Kyriakides, MP Cyprus, Council of Europe member and Past President of EUROPA DONNA. In the lead up to this, we participated in a Breast Cancer Exhibition at the Council of Europe in Strasbourg on 2 October, where we displayed posters and distributed key materials to parliamentarians. Our Head of Policy/Public Affairs, Karen Benn, also gave a speech at the meeting of the Health Committee on 2 October on the need for optimum breast cancer care for all women across Europe. Following an inspiring debate on 3 October during the plenary session in Strasbourg, the Parliamentary Assembly of the Council of Europe unanimously adopted the Resolution. Encouraging patient empowerment at the EPF annual conference and general meeting Our Head of Policy and Public Affairs, Karen Benn, represented us at the European Patients’ Forum (EPF) annual conference and general meeting in May, where topics included the European elections, healthcare access and quality, and patient empowerment and youth. We are on-going members of EPF and served on its Executive Committee for the first five years. ED Karen Benn attends the annual conference and other EPF meetings. Partnering in CANCON, the EU’s new Cancer Joint Action project Our Head of Policy and Public Affairs, Karen Benn, attended the second group meeting of CANCON (CANcer CONtrol), the successor project to the European Partnership for Action Against Cancer (EPAAC). CANCON will run from 2014-2016. ED is a Collaborating Partner on three work packages of the CANCON project, focused on screening, survivorship and community cancer care. Karen also attended the CANCON WP2 dissemination team kick-off meeting in Brussels on November 18, which is led by the Finnish Cancer Society. The meeting was well attended and gave a good perspective of activities and the CANCON work packages presented their status of work. The CANCON communications strategy is based on network analysis and there was common understanding in the Brussels meeting that learning from each other


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results in more effective outcomes in dissemination. As Cancon has just started this year, the first year of collaboration is internal and on the 2nd and 3rd year the aim is to grow outreach. Tools for presenting Cancon have been developed and are on the website www.cancercontrol.eu including Powerpoint templates and brochure. The communications strategy is also on the website, under the section WP2 Dissemination.

European Commission- DG SANCO In 2014 ED continued to press for a European protocol for accreditation of breast units and we continued to urge DG SANCO to expedite this project. Three-and-a-half million Euros have been allocated for the project which is being carried out by the European Commission within the Joint Research Center (JRC) located in Ispra, Italy. A new edition of the EU Guidelines will be needed in order to develop the protocol project and all experts will need to be involved in this. DG SANCO has specifically indicated that ED’s input into this is essential. As requested in EU legislation (Council conclusions on reducing the burden of cancer 10-06-2008), JRC plans to implement a voluntary EU Breast Unit Accreditation Project based on an EU protocol, which includes all stages of Breast Cancer Care, from screening to follow-up, and which aims to put the patient at the centre of the process and to harmonise the quality of services delivered, independently of how they are organised. Through 2013, Susan Knox and Karen Benn attended these meetings on ED’s behalf. Susan also represented ED at editors meetings of the EU Guidelines as well as liaising with EUSOMA concerning breast unit certification, etc.

Italian Health Ministry Conference

On 19 December, Susan Knox gave a presentation on women’s rights, stressing every woman’s right to access state-of-the-art services in specialist breast units at a conference entitled, “Awareness and Commitment for Breast Cancer in the Health System”. This conference was held in Rome and was hosted by the Italian Ministry of Health under the auspices of the Italian Presidency of the Council of the European Union. Many dignitaries and professionals in the field of breast cancer provided expert input at the meeting, including representatives of the Italian Health Ministry, WHO and the European Commission.

COLLABORATIONS: ESMO 2014 Congress Our Executive Director Susan Knox and Vice-President Roswitha Britz attended the 2014 ESMO Congress, held from 26-30 September 2014 in Madrid, Spain. ED had a stand where it distributed materials and made several new contacts. European Society for Radiotherapy and Oncology (ESTRO) meeting Our Vice-President, Roswitha Britz, represented our coalition at the annual European Society for Radiotherapy and Oncology (ESTRO) meeting in Madrid on 6 September. She described our organisation and provided an overview of current strategic priorities and plans for the future for the European radiologists in attendance. European Society of Radiology-Patient Advisory Groups for Medical Imaging Our representative on the ESR-Patient Advisory Groups for Medical Imaging, our Vice-President Roswitha Britz, participated in two meetings in 2014. EBCC-10

http://www.cancercontrol.eu/


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In 2014, ED Board leaders Elizabeth Bergsten Nordström and Roswitha Britz, as well as ED CEO Susan Knox were actively engaged in the Organising and Scientific Committee meetings for EBCC-10 which will be held on Mach 9-11, 2016 in Amsterdam. Plans and programming are being finalized to provide more time to disseminate information concerning the conference. ED will be involved with Patient Advocacy representation throughout the programme and there will be a major emphasis on raising awareness of the 2016 deadline for implementing specialist breast units in Europe. BIG Meetings Europa Donna’s collaboration with the Breast International Group continued in 2014. ED attends BIG’s general update meetings, known as “scientific committee meetings” whenever they are held and also serves on a number of trial committees for BIG. In September, ED’s Executive Director, Susan Knox, attended the Steering Committee meeting for the AURORA programme. This is a major new BIG research programme that aims to use molecular screening to improve the understanding of breast cancer and its response/lack of response to available drug therapies. For the first time, metastatic breast cancer tissue specimens are being collected and characterised on a large scale, with the added value of identifying targets for future treatments that can significantly improve survival. The project is to recruit 5,000+ patients per year; there will be a pilot of 30 patients in four centres. Susan and Karen Benn both serve on the Steering Committee for this program. In addition, Susan Knox and Roswitha Britz are ED’s representatives on the BIG Scientific Committee meeting and they attended the Committee meeting at ESMO in September 2014. The attendees were updated on the progress of all of the 29 clinical trials currently being run by BIG, including MINDACT, where ED serves on the Steering Committee. Collaborating in research through the EBCTCG Our 2014 President, Elizabeth Bergsten Nordström, serves as a patient advocate on the Early Breast Cancer Trialists’ Collaborative Group (EBCTCG). At the June meeting, the group discussed an on-going meta-analysis of treatment trials, as well as another research cycle involving statistical analysis and cross-referencing of data on systemic treatment to reveal undiscovered applications, combinations, and the like. EPHA-European Public Health Alliance ED is a member of EPHA. ED follows EPHA activities by e-mail, receives their publications and position statements on key health issues.

ABC 3 Advocacy Committee ED Board member Evi Papadopoulos participated in ESR-Patient Advisory Groups for Medical Imaging in 2014.

In January 2014, the ED Board reviewed our ED EU Advocacy Breast Cancer Presence and Calendar of Meetings scheduled for the year; at the September Board meeting an updated calendar of meetings was reviewed and discussed; at our January 2015 Board meeting the meetings attended by various Board and staff members were discussed as appropriate and evaluated.


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See also “Participation in EU Actions” section for additional information

Please note: European Parliament Meetings held were not included in EUROPA DONNA’s Work Programme proposal to the CHAFEA.

FORUM SUPPORT PROJECT In 2009 ED instituted the Forum Support Project, for which members of the Executive Board and ED staff as appropriate contact our national members who are either less active or experiencing problems and they devise tailored plans and effect positive change at the country level. Depending on the challenges faced by the countries, the Working Group members might: advise on organisation start-up, organisation building, membership issues, general assemblies, overcoming inequalities; they could also get key leaders into training programmes on how to run an independent organisation and could take them to various meetings of import. An important part of this project, ED designed, developed, and distributed a Membership Toolkit for all member fora that provides a wealth of information on ED’s structure and organisation (including ED’s Constitution and 10 Goals, guidelines on setting up a EUROPA DONNA forum, on-going membership information, use of the ED logo); policies (including an overview on working with sponsors and ED’s sponsorship policy, other forum-related policies); copies of recent financial statements and minutes from General Assemblies; the current ED Work Plan; copies of ED publications. In 2014, EUROPA DONNA continued to distribute this important kit to upon request from existing fora or when the National Representative changed in a country. Supporting Active Membership In 2014, ED focused on previously active countries who subsequently became inactive (e.g. they do not attend ED events, do not submit an annual country report on activities, and do not pay dues) when they lost their ED National Representative, namely Germany, Serbia, Moldova, and Lithuania. For these countries, a new person or group usually had to be identified and cultivated to become an ED member. At Board meetings in January and September 2014, the status of each of these countries was reviewed, the next step to be taken and who was responsible was decided. The process of getting a new group formed and functioning is often a long one and 2014 was no exception. ED was successful in identifying a new National Representative for ED Russia in late December 2013/early January 2014. This was done following leads for re-activating this country via any contacts made by ED leadership. Head of Policy Karen Benn then followed up on those leads with emails and phone calls and a “dormant” forum was re-activated by finding new appropriately-experienced and interested people to take on the running of the ED forum. The Russian National Representative and other advocates in the forum are highly motivated; they have already held a local meeting on screening and the Russian National Representative attended EBCC-9 and the ED Advocacy Leader Conference during the year. The ED Head Office and Board also worked diligently to identify women to get involved in ED Germany in 2014, and it continues to make progress toward this goal in 2015. Likewise, ED Board, the CEO and Head of Policy/Public Affairs continue to work to identify potential women or groups to get ED Serbia, ED Lithuania and ED Moldova active again. Various ED Board members have possible candidates to restart the ED Serbia and Lithuania fora.


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Furthermore, ED CEO Susan Knox along with Board member Evi Papadopoulos and former ED President Stella Kyriakides (both of ED Cyprus) worked to deal with issues of inactivity of the ED Greece forum in 2014 and put them in contact with other local breast cancer groups known to us. They have elected a new ED National Representative and have expressed interest in becoming more active in spite of economic difficulties faced by the country. INTERNAL In order to accomplish the activities outlined above, ED needed to have a strong internal organisation as well as an Executive Board and membership unified in the effort to realise our goals. In 2014, ED infrastructure operated in the following way:

BOARD MEETINGS AND GENERAL ASSEMBLY The ED Board of Directors and CEO met three times in 2014 (full meeting in January and briefer meetings in March and September) to discuss matters of the organisation. At the January meeting, they decided on and approved a programme and budget for 2014. From this, the CEO created a Work Plan and sent it to the Board and to National Representatives in all ED countries so that they could coordinate their work plans with the Head Office’s. (See ATTACHMENT 3 for ED Work Plan 2014.) In March and September the Board met again to ensure that the Work Plan and budget were on track and to address any problems or issues that had arisen. At each meeting, the CEO reported to the Board in detail on the Work Programme and priorities and each staff member also wrote reviews of activities and progress on projects as necessary, including analyses of post-conference/training course evaluation forms, including indicators as appropriate, and impact evaluations. At the September meeting held at the conclusion of the General Assembly, a new President and Vice President were elected to start as of 1 January 2015, as the outgoing President and Vice President had reached their term limits. As always, ED’s CEO remained in contact with the Board on matters of importance throughout the year and to kept Board members posted on our successes, shortfalls and progress. ED held General Assemblies during EBCC-9 in March and the ED Advocacy Leader Conference in September to update ED members on the Head Office’s work through the CEO’s report and to vote on one Board positions and detail progress on the ED five year Strategic Plan (2014-2018). At these meetings, attended by the National Representative and National Delegate of each member country, as well as other members, the activity and ongoing programmes of the organisation were reviewed, evaluated and discussed in detail. Board elections were held at the September meeting. Time was allocated during the September meeting to discuss some proposed changes to the ED Constitution. As always, time was allocated for members to raise issues and questions and for discussion.

HEAD OFFICE ADMINISTRATION The ED Head Office runs the Coalition for all of Europe, advocating at the European level for evidence-based best practice health policy changes for breast services, as well as providing educational and information support for its Coalition members and for women living throughout Europe. It takes care of ED’s day-to-day administration and all of its events, conferences, programmes etc. are run by its Head Office. It has a


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part-time staff of five and is headed by its CEO Susan Knox, a two-time breast cancer survivor. Other staff are Karen Benn (also a breast cancer survivor), Head of Policy/Public Affairs; Barbara Klein, Communications Officer; Daniela Pirisi, Administrative and Events Officer; and Paige Robinson, Development Officer.

Administrative tasks performed to ensure the smooth running of the organisation in 2014 included: phone and computer oversight and maintenance, bookkeeping and providing accounting documentation, staff administrative management (hours, contracts, salaries, etc.), mail-outs, responding to inquiries and requests, handling insurance and office rental, paying suppliers’ invoices, paying bursary reimbursements to ED members for attending conferences, ordering office supplies, administering CHAFEA Operating Grant.

List of ED’s 2014 Activities EDUCATION EUROPA DONNA Annual Breast Cancer Advocacy Training Course European Breast Cancer Conference (EBCC), co-organized by ED, EORTC, & EUSOMA ESO Masterclass in Patient Advocacy KNOWLEDGE DISSEMINATION Breast Health Day Breast Health Day Campaign Materials Breast Health Day Video The Breast Health Day pledge Webcasts on YouTube Breast Cancer Facts Videographic Breast Health Day Poster and Mini-Diary Banners and Website Badges Social Networking Sites PUBLICATIONS/COMMUNICATIONS Breast Health Day News

ED 20TH Anniversary Brochure

Highlights of ED’s 11th Pan-European Conference

Short Video Production, “EUROPA DONNA 20th Anniversary Video”

Annual Report and Financial Statements

ED Newsletter

Breast Health Guide: “For Your Breast Health”

Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis, Fourth edition: translation into Slovenian

Metastatic Breast Cancer Annex to the Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis, Fourth edition translation into Czech and Portuguese

Electronic News (4 editions)

Exploring the Role of Advocates in Breast Cancer Research


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WEBSITES www.europadonna.org www.breasthealthday.org ADVOCACY: COLLABORATION AND NETWORKING Parliamentary and Policy Activities Breast Health Day Information Day at the European Parliament Breast Cancer Exhibition at the Council of Europe, Strasbourg Cancer Control (CANCON) European Patient Forum Annual General Meeting and Conference SUMMARY OF SEMINARS, CONFERENCES AND OTHER EVENTS ATTENDED: During 2014 EUROPA DONNA served on the following committees: Research and Clinical Trials BIG (Breast International Group) Scientific Committee MINDACT (BIG) Steering Committee AURORA (BIG) Steering Committee Early Breast Cancer Trialists’ Collaborative Group (EBCTCG) OLYMPIA Clinical Trial Steering Committee LIVE TRIAL Steering Committee During 2014 EUROPA DONNA participated in the following organisational activities: Policy Council of Europe, Breast Cancer Exhibition, Strasbourg, France European Patients’ Forum European Public Health Alliance MBC roundtable at the European Parliament ECCO − l meeting about future governance of ECCO European Commission Expert Group on Cancer Control Italian Health Ministry meeting on “Awareness and Commitment for Breast Cancer in the Health System” Conferences EBCC-9 EUROPA DONNA Advocacy Leader Conference European Patients’ Forum Conference ESMO 2014 Congress ED Advocacy Training Course ESTRO meeting San Antonio Breast Cancer Symposium Other Meetings EBCC-10 Organising Committee EBCC-9 Executive Scientific Committee International Experience Exchange for Patient Organizations European Breast Cancer Council Digital lab Breast Cancer Patient Group Forum ABC 3 Advocacy Committee ESR-Patient Advisory Groups for Medical Imaging


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LIST OF TRAVEL AND SUBSISTANCE COSTS: Travel and subsistence costs incurred during 2014 consisted of speakers’ and participants’ travel, accommodation and meals from our Advocacy Training Course. All costs incurred were included no matter what European countries participants came from because the presence, input, and sharing of experience of all of the advocates is a critical part of the learning process that ultimately leads to better breast cancer services for all European countries.


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2014 TRAVEL COSTS OF EXTERNAL INVITEES ADV TRAINING--LINE 323 OF EAHC BUDGET Martina Krammer, Training Course attendee, Austria 213,00 Gabrielle Herzog, Training Course attendee, Austria 476,00 Anna Aristodemou, Training Course attendee, Cyprus 400,00 Niki Olympiou, Training Course attendee, Cyprus 400,00 Nikola Samkova, Training Course attendee, Czech Republic 201,00 Eva Schunke, Training Course attendee, Czech Republic 200,00 Anu Niemi, Training Course attendee, Finland 306,00 Katri Paalanen, Training Course attendee, Finland - Nato Turashvili, Training Course attendee, Georgia 273,00 Ketevan Shukakidze, Training Course attendee, Georgia 298,00 Dionysia Hatziantoniou, Training Course attendee, Greece 396,00 Anna Sigridur Arnardottir, Training Course attendee, Iceland 531,00 Fjola Viggosdottir, Training Course attendee, Iceland 840,00 Margaret Mulcahy, Training Course attendee, Ireland 194,00 Mary McAdam, Training Course attendee, Ireland 240,00 Anat Melamed, Training Course attendee, Israel - Michal Kolath Arbel, Training Course attendee, Israel - Francesca Balena, Training Course attendee, Italy 173,00 Aigul Kuldaeva, Training Course attendee, Kyrgystan 400,00 Nuriia Temirova, Training Course attendee, Kyrgyzstan 400,00 Sarmite Lauberte, Training Course attendee, Latvia 356,00 Tatjana Petlaha, Training Course attendee, Latvia 383,00 Giulia Valenzano, Training Course attendee, Luxembourg 191,00 Irena Spiroska, Training Course attendee, Macedonia 155,00 Atina Sazdova, Training Course attendee, Macedonia 175,00 Anna Zammit, Training Course attendee, Malta 125,00 Audrey Galea Souchet, Training Course attendee, Malta 125,00 Dominique Sprengers, Training Course attendee, Netherlands - Ingrid Mekenkamp de Romph, Training Course attendee, Netherlands - Ingvild Roise, Training Course attendee, Norway 261,00 Harriet Blindheim, Training Course attendee, Norway 376,00 Ewa Klaja, Training Course attendee, Poland 108,00 Malgorzata Karwala, Training Course attendee, Poland 80,00 Oksana Moldovanova, Training Course attendee, Russia 334,00 Svetlana Ilinykh, Training Course attendee, Russia 400,00 Alena Kallayova, Training Course attendees, Slovakia 206,00 Darina Kallayova, Training Course attendees, Slovakia 248,00 Simona Skrobar, Training Course attendees, Slovenia 199,00 Barbara Drnac, Training Course attendee, Slovenia 198,00 Amelia Nerin, Training Course attendee, Spain 351,00 Merce Leal, Training Course attendee, Spain 285,00 Karstin Lindblom-Sandqvist, Training Course attendees, Sweden 103,00 Susanne Dieroff-Hay, Training Course attendees, Sweden 285,00 Masuda Bobkhojeva, Training Course attendee, Tajikistan 430,00 Nafisakhon Yunusofa, Training Course attendee, Tajikistan 430,00 Seda Yazici, Training Course attendee, Turkey 349,00 Yasemin Nazli, Training Course attendee, Turkey - Iryna Zub, Training Course attendee, Ukraine 80,00 Iryna Tarasenko, Training Course attendee, Ukraine 56,00 Marion Lewis, Training Course attendee, UK 276,00 Amanda Shewbridge, Training Course attendee, UK 127,00

Elizabeth Bergsten Nordstrom, Training Course Speaker (Sweden) 429,00 Roswitha Britz, Training Course Speaker (Spain) 312,00 Bettina Borisch, Training Course Speaker (Switzerland) 273,00 Chris de Wolf, Training Course Speaker (Switzerland) 281,00

Sub-Total Travel Costs of External Invitees Advocacy Training 13.928,00


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2014 SUBSISTENCE ALLOWANCES EXTERNAL INVITEES FOR ADV TRAINING SPEAKERS AND ED ATTENDEES--LINE 324 OF EAHC BUDGET

Advocacy Training Course 4 Coffee breaks Nov 14 afternoon; Nov 15 morning & afternoon; Nov 16 1.716,00 Advocacy Training CourseLunch#1 November 15 & #2 Nov 16 2.640,00 Advocacy Training Course Hotel for all attendees and speakers 20.802,00 Advocacy Training CourseDinner #1 at restaurant Meneghina November 14 1.740,00 Advocacy Training CourseDinner # 2 Antica Osteria Milanese November 15 1.500,00 Travel food for attendees and speakers--Thurs, Sun, Mon 603,00

Sub-Total Subsistence of External Invitees Advocacy Training 29.001,00 CHANGES TO ORIGINAL PLANNING, INCLUDING PROBLEMS WHICH OCCURRED AND HOW ED SOLVED THEM: ED made a few small changes to our 2014 Core Programme as compared to what we had originally written in our proposal to the CHAFEA due to circumstances beyond our control. They are as follows:

Deliverables

• With regard to Deliverable 8, we projected two translations of our Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis, but in 2014 we only had one translation completed (into Slovenian language, completed and printed in October 2014). This is because, as we explained in our proposal (see page 12 of Draft Work Plan 2014), the initial translations are carried out on a voluntary basis by ED’s National Fora. After the initial translation is completed, we check the translation for accuracy, make any necessary changes, then go back to the forum in question for their further edits if necessary and eventual approval before we have it typeset and printed. The ED Head Office cannot control whether a National Forum decides to take on the translation (which is a major project) or not and we therefore cannot guarantee how many translations we will do in a given year.

As a substitute for the second translation (with permission from Anne-Marie Yazbeck of the CHAFEA), in 2014 we completed two translations of our document, Metastatic Breast Cancer: Annex to the Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis, Fourth edition. The English language version of this document was added as a deliverable with CHAFEA’s permission to our 2013 grant as it had not been foreseen in time to add it either to the 2013 or 2014 CHAFEA proposals. This publication is a loose annex/supplement to ED's Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis covering metastatic disease as presented in the EU Guidelines. In 2014, we completed translations into Czech and Portuguese languages.

• With regard to Deliverable 10, Originally the intention was to produce a four- to eight-page EU Breast Service Accreditation Overview Booklet meant to follow on the JRC’s implementation of a voluntary accreditation scheme based on EU protocol, which would include all stages of Breast Cancer Care, from screening to follow-up. Aimed at European breast cancer advocates, this booklet was meant to describe the most important points of the accreditation scheme and


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what services advocates should push for. This deliverable was contingent on JRC implementing this scheme in the first half of 2014, which did not happen. ED, with permission of Anne-Marie Yazbeck of the CHAFEA, substituted the booklet with a 12-page plus cover booklet on Exploring the Role of Advocates in Breast Cancer Research. (Engaging in the breast cancer research agenda is an important aspect of ED’s new 5-year plan.) Topics include: how clinical trials work and what role advocates can play from the scientists’ perspective; ED’s role in the MINDACT trial and European breast cancer research; how advocates can contribute to research; questions for advocates to answer when considering a role or already engaged in a clinical trial; recommendations for advocates who become involved in the breast cancer research process; next steps for ED to engage its advocates in the breast cancer research process; ED’s research evaluation criteria. The booklet was presented, discussed and given a workshop at the ED Advocacy Leader Conference in September 2014 (the Advocacy Leader Conference is not part of Core programming).

• For the 2014 Work Programme ED planned to have a team of external

evaluators to conduct an evaluation of the 2014 Work Plan; this team was originally foreseen to comprise three Past-ED Board members who are breast cancer experts with experience of running large non-profit organisations. In the end, one of the team was unavailable to carry out the work and so ED instead used two past Board members. This very small change made very little impact on the evaluation. (This team was foreseen to be complemented by one evaluation consultant selected as best value in a bidding process conducted by ED, and that did occur.)

Evaluation - Please provide a qualitative evaluation of the execution of all tasks mentioned in

Annex I of the grant agreement Summary of Evaluation Findings Advocacy Training Course In 2014, 51 women from 27 countries took part in EUROPA DONNA’s European Breast Cancer Advocacy Training course and we received feedback from most of them (48). Overall the feedback was excellent, with everyone saying that the training had met their expectations this year and the vast majority saying it was “very useful” – the highest rating. 21 of the participants also rated each and all of the individual presentations “very useful”. The presentation which rated most highly was, as always, Treatment of Breast Cancer (Alberto Costa) with 47 rating Alberto’s presentation “very useful” and just one saying “moderately useful”; and 25 also said it was their highlight of the day. The Clinical Trials (Giuseppe Curigliano) presentation also rated well with some, with 10 saying it was their highlight of the day and 39 saying “very useful”. The Advocacy and Lobbying presentation was given by Karen Benn this year, for the first time. It now focused much more on “how to” advocate and lobby and what steps to take, and much less on all of the examples of successful lobbying strategies at the European level.


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Stella had to cancel her attendance this year so there was no presentation on Psychosocial Aspects of Breast Cancer. A number of attendees commented that they would like this topic to be covered. The group in general was very energetic and positive and they started networking straight away. General comments on personal highlights/learnings from the course included “I feel guts, energy to do anything that is needed” and “creative girls in my group”. “I learned a lot”, “very interesting” “very good” were also comments, along with “the importance of the recurring theme that every BC patient is entitled to a written pathology report”. Suggestions included more on psychosocial aspects (which attendees always find very interesting), more examples of advocacy and lobbying successes, less medical terms and statistics. A few also wanted more time for the workshops, moving around (2 minutes to stand up between presentations!), coffee and networking! There were also a few comments about understanding English and language issues in general… The Communications Skills training was received extremely well again this year; out of 47 participants who gave feedback 36 gave it 10 out of 10 with most of the rest giving it 9 . The participants always seem to find this part of the course very valuable and inspiring and really enjoy the interactivity. A few commented that it is very useful to hear the different experiences from different countries and, as in previous years, asked for even more time for this part of the course and for more time for practice. In terms of suggestions, a few commented that it would be useful to have more info about comms skills for social media and where to find resources on the internet. Another commented that she would like “how to thank people officially” to be covered. Others commented that they would like more on government funding issues and lobbying. As has happened in the past, a few people commented that language issues were a problem for some participants, thereby disturbing the group. All in all it was thoroughly enjoyed and useful! (See ATTACHMENT 4 for full evaluation report Advocacy Training.) An additional follow-up evaluation will be sent to all course participants at three months after the Advocacy Training Course to determine if and how their advocacy efforts have changed as a result. Summary of Assessment of ED Publications/Communications Survey

Publications & Communications Survey 2014 Results

Introduction

In November 2014 EUROPA DONNA sent out a publications and communications survey to the national representatives of its 46 ED member countries. The purpose of the survey was try to understand the usefulness of ED’s publications and communications, and how we should move forward with them in 2015. For each publication/communication the National Representative was asked to rate the usefulness and provide other information, depending on what it was. A total of 22 EUROPA DONNA fora responded to the survey. This is lower than the response rate of the previous publications survey (by 5 responses), but considering that this was a longer and more complicated survey and it was delivered very soon after another lengthy survey conducted by ED’s outside evaluator, the rate is understandable.


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The national Europa Donna organisations which responded to the questionnaire were: Austria, Belgium, Croatia, Czech Republic, Estonia, France, Georgia, Ireland, Israel, Italy, Latvia, Luxembourg, Macedonia, Malta, Netherlands, Norway, Slovenia, Spain, Switzerland, Tajikistan, Turkey, and UK. Summary

• Average rating overall was 8.856 (rating 1-10, ten being the highest) • Highest rated in order were 1st ED’s website (9.6); 2nd the MBC Annex to the

Short Guides (9.5); 3rd Short Guides and ENews (both 9.136) • Lowest rated were 14th Breast Health Day News (8.318) and the 20th

Anniversary Video (8.6)

Conclusions

• 17 out of 22 countries indicated that they would be satisfied with electronic-only versions of ED publications in the future. However, the other 5 countries adamantly requested hard copies as they find them necessary for their advocacy work. We could consider sending hard copies selectively only to the countries that will use them

• The Short Guide continues to be of great importance to ED fora in their advocacy work, and the MBC Annex is a very useful addition. The majority of countries indicated that they would like to translate the annex if it hadn’t already been done

• Almost 100% of respondents indicated that between the ED Annual Report and our ENews editions they are kept adequately informed of the ED Head Office’s activities

• All respondents indicated that they want us to publish more videos like our 20th anniversary video in the future, and most indicated that they had re-posted our video on their websites, Facebook and/or Twitter

• 84% of respondents indicated that Facebook and Twitter are the best places for sharing information

• ED should continue to send the National Reps press releases on events/activities held by the Coalition, as all but one of those who responded to the question found them useful, and 81% responding countries indicated that they send ED press releases to others

• Breast Health Day News was the lowest rated of all ED publications (although it received a very respectable 8.318), possibly because it is no longer necessary as most of the information is already available on the BHD website; we should consider discontinuing it. Second-lowest rated was the 20th Anniversary Video (8.6 rating), probably because its target audience was the general public rather than ED fora

• While more people preferred to receive information about Pan European Conferences by email (59%), a significant minority (41%) preferred to receive information both by email and by post. Further, all but one preferred to sign up for the conferences using the online form rather than a printed form. We should consider mailing the Pan European brochure only one time instead of two in the future.

(See ATTACHMENT 5 for full evaluation report Publications Survey.) Evaluation of www.europadonna.org website in 2014: January 2015



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Since January 2012 we have been managing the new website format in-house. By and large the website is doing well, with new ideas being added as time goes on, with subsequent improvements and additions to the general content. In general the website is well received, in the 2014 Publications & Communications Survey 2014, the ED website received the highest rating (9.6 out of 10) by our member countries.

The format of the website is a fixed template using WordPress, but there are many modifications that can be made such as changing the banner images on the home page and the content of the menu, as well as changing and adding new images and publications.

Naturally the website is under continuous development and updating, in the sense that new content is being added, e.g. publications both on the homepage and under the Publication section, our e-news is loaded on the website as soon as it is sent out and so are all the Publications printed. Some changes are done by the web design agency, the more structural ones on the home page, for example. The routine changes like the country reports or changes in contact details, content or events are done in-house.

In 2014 we have highlighted ED’s 20th anniversary, changing the logo for the whole year for eg. We have also put EDs 20th Anniversary video on our home page and have highlighted the European Code Against Cancer immediately under the map with the member countries. The very well received BHD 2014 video is also on the home page.

The statistics overview from Jan. 2014 to December 2014 reveals the following:

• 10.700 total number of Sessions within the date range (compared with 7,682 in 2012*). A session is the period time a user is actively engaged with our website, app, etc. All usage data (Screen Views, Events, Ecommerce, etc.) is associated with a session.

• 7.580 unique visitors that have had at least one session within the selected date range (compared with 5,227 in 2012*). Includes both new and returning users.

• 29.623 Page views i.e. the total number of pages viewed. Repeated views of a single page are counted (compared with 10,515 in 2012).

• 2.77 Pages/Session (Average Page Depth) is the average number of pages viewed during a session. Repeated views of a single page are counted.

*2012 statistics were used as a comparison because we were only able to gather statistics for four months in 2013 as we changed our website provider several months into the year. The number of site visitors is not surprising, since this website is intended primarily for European breast cancer advocates rather than patients or women in general. Evaluation of the www.breasthealthday.org 2014 Website and Digital Campaign: With the message “Take Your First Step for Your Breast Health”, Breast Health Day has continued to reach out to women of all ages across the globe to encourage them to become involved in this campaign to promote healthy lifestyles and breast cancer



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prevention. The event was also promoted throughout our member countries, featuring a broad range of colourful and active events, and through an extensive web-based campaign using the websites www.breasthealthday.org and www.europadonna.org. Activities across Europe are posted on the campaign website www.breasthealthday.org and have been published in our Breast Health Day News summing up the campaign. EUROPA DONNA and Breast Health Day had a very impressive reach in 2014 with regard to social media with numbers increasing in almost every area over 2013. Overall, ED’s presence on the Web was a success in 2014, widely spreading ED messages on breast cancer and breast health. See the following statistics: Website www.breasthealthday.org

- 3,979 visits from 116 countries (compared with 3,154 visits from 102 countries in 2013) -BHD website page views: 11.205 (compared with 8,646 page views in 2013)

Facebook - Total Fans December: 2639 (compared with 2,036 fans in 2013) - Total fan-base growth: +578 over 2013 - Total updates: 83 - 6 local fora used campaign materials on their FB pages - There are now 34 ED forum Facebook pages - Total reach: 411.989 - Total post views/impressions: 789.509 (compared with 189,189 views in 2013)

Twitter - 385 Followers (statistic not available from 2013) - Twitter reach (followers) of those who interacted with mentions, RT’s or talking about BHD2014

campaign: 424,769 (compared with 1,334,158 in 2013)

Videos - BHD2014 campaign total video views: 54,052 (7,996 on YouTube, 46,056 on Facebook) (compared

with 4,027 video views in 2013) - YT channel views (from June 2014 to January 2015): 10.390 (+4.000 from 2014) (compared with

5,636 global channel views in 2013) General Evaluation of ED’s Use of Social Networking Sites in 2014: Our EUROPA DONNA and Breast Health Day pages on Facebook, Twitter and YouTube had high traffic throughout the BHD campaign. Many ED Fora joined in the social networking activities by making Breast Health Day posts and displaying the Breast Health Day banner.

GENERAL EXTERNAL EVALUATION OF 2014 CORE ACTIVITIES ED put together a team of External Evaluators for the Work Programme 2014; this team comprised two of our past Board members (Ellen Vershuur, Netherlands (Lawyer) and Sema Erdem, Turkey (retired executive, IBM)) who are both breast cancer experts with experience in running large non-profit organisations. This team was complemented by one outside consultant, Jo Lucas. She has significant






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experience of evaluating the work of non-profits (including health-related, advocacy networks) funded by the European Union and also running non-profits. Ms. Lucas performed the following tasks: 1. CONDUCT FOCUS GROUP At the ED Advocacy Leader Conference in September 2014, she held one hour-long focus group on Sunday 21 September. We selected ED non-Board members of varying levels of involvement with the coalition from a cross-section of geography and level of breast cancer services available in their countries. 2. OBSERVE GENERAL ASSEMBLY Jo Lucas observed the General Assembly held on Saturday 20 September as it was a part of the 2014 Core Programme. 3. CONDUCT FOUR SURVEYS/INTERVIEWS Conducted surveys and interviews in October through December on the following topics:

• Major survey of ED National Representatives on various topics • Interviews with two Board members on the topic of the implementation of the

new strategic plan • A survey for 14 participants of the Advocacy Training Course on long-term

benefits of the course • Informal discussions at the Advocacy Leader Conference and general assembly

4. REVIEW WEBSITE AND PUBLICATIONS/COMMUNICATIONS FROM 2014 CORE PROGRAMME Studied the ED website and the publications in the light of the activities outlined in the work plan for 2014. 5. DEVELOP REPORT ON FINDINGS Gathered data from above as well as ED core programme publications, meeting minutes, course/conference agendas, participants lists, etc. that pertained to the Core Programme in 2014. Provided analysis of all collected data-identification of key issues, general themes of evaluation, etc. Submitted report to ED in mid-January 2014. 7. FOLLOW UP ON REPORT: PAST PRESIDENTS/EVALUATOR REFERENCE TEAM Team of two ED past Board leaders (Ellen Vershuur. Sema Erdem) received reports on internal and external evaluation activities and gave input. At end of grant period, they read both external evaluation report and Advocacy Training Course (internal) evaluation results and Communications/Publications evaluation results (internal evaluation) and gave input on results obtained in January/February 2014. Summary of External Evaluator Jo Lucas’s ED Core Evaluation 2014: “I continue to be impressed and encouraged by the clarity of vision and the commitment to the advocacy role and function of EUROPA DONNA and this is supported by the very positive feedback from all the participants in this evaluation. Some Fora seem to focus more on raising the profile of breast cancer, ensuring that women have access to good information and on the support of members while others are becoming very sophisticated advocates in the field of research and policy development. The core programme of strengthening the capacity of ED, intensifying country support and intensifying its presence within the EU are identified in the proposal as being


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critical to its functioning and the support and development of advocates across the network. These activities are clearly essential to the success in maintaining this very clear focus on the advocacy role of the organisation. ED continues its high profile advocacy work at the EU level and with other stakeholders in the field very successfully. The resolution at the Council of Europe this year is a good example of ED membership and staff team working well together to achieve a useful political goal.” Her assessment of ED’s 2014 Core Programme continued to be extremely positive in all of her documentation. (See ATTACHMENT 6 for Jo Lucas’s full Core Programme evaluation report 2014.) Summary of Past Board Leaders’ Input on Results Obtained in ED Core Evaluation 2014: Past Board Panel members were asked to read the Advocacy Training Course evaluation results (internal evaluation), the ED Publications and Communications Survey evaluation results (internal evaluation) and the external evaluation report and give input on results obtained. Their responses to all questions were very positive of all aspects of the programme results. Panel members were asked to rate five statements, responding on a four-point scale of “Strongly Agree,” “Agree,” “Disagree,” or “Strongly Disagree.” “The Advocacy Training Course evaluation results show that through this course in 2014 ED: 1) provided ED Fora with accurate up-to-date information and proven strategies to lead their countries in advocating for improved breast health and 2) directly educated women about the importance of breast cancer screening, early detection, breast cancer issues and services and breast health” Strongly Agree: 2 “The Communications & Publications evaluation results show that ED in 2014: 1) provided ED Fora with accurate up-to-date information and proven strategies to lead their countries in advocating for improved breast health and 2) directly educated women about the importance of breast cancer screening, early detection, breast cancer issues and services and breast health” Strongly Agree: 2 “The external evaluation report draft results show that ED Core Programming in 2014: 1) provided ED Fora with accurate up-to-date information and proven strategies to lead their countries in advocating for improved breast health and 2) directly educated women about the importance of breast cancer screening, early detection, breast cancer issues and services and breast health” Strongly Agree: 1; Agree: 1 “Overall – achievement of general ED objectives in 2013” Strongly Agree: 1; Agree: 1 “Overall – achievement of Core Programme objectives in 2013” Strongly Agree: 1; Agree: 1 Panel members were then asked to rate four questions on a score of 1-10, ten being the most positive: 1. “Based on the evaluations you have read, how do you judge the quality of the Advocacy Training Course in 2014?” Ratings given were: 9, 9 2. “Based on the evaluations you have read, how do you judge the quality of ED communications and publications in 2014?” Ratings given were: 8, 10


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3. “Based on the evaluations you have read, how do you judge the quality of the ED Core Programme in 2014?” Ratings given were: 9, 10 4. “Based on the evaluations you have read, how well did the ED Core Programme in 2014 match the users’ needs?” Ratings given were: 8, 9

Finally, they were asked to add any additional comments they wished to make about the EUROPA DONNA’s 2014 Core Programme and evaluations performed. ED received the following comments:

• specifically that a ‘map’ of the process could be useful to helping them understand what they were getting involved in and where to start and also a glossary of terms to support the women who are interested in taking party in clinical trials to fully understand the context.

• I think this could be replied by Jo during the interview with the National Representative that each clinical trial has it's specific road-map or flow chart to be followed and it's not a standard process that could be forwarded to the participant but what is a process that could be shared is the items of informed patient and the terms and conditions with informed consent etc. which is captured in the 'clinical trials in BC' brochure of ED…

• One slightly worrying response, that the staff team are aware of and have followed up on, was from a National Representative who stated that their board did not agree to using ED materials, and are generally unsupportive of ED. This example illustrates very well some of the difficulties that can be experienced by small organisations working in this very personal and emotionally resonant field. It also highlights the importance of the forum support work that the staff team and the board are engaged in. Sometimes this is developmental, supporting people to start new groups but much more often it is problem solving, enabling people to make changes and work together in this sometimes very sensitive environment.

• This is an internal issue that both the national representative could search on the reasoning behind not using the ED sent documents and communicate the issues with the ED office at the time the concern was raised so that both the relevant fora and all would have the benefit improving whatever was not satisfactory! I would suggest a 'team building, leadership, conflict to cooperation' type of short but to the point type of training session to be included in the ED advocacy leaders' meeting to overcome this present and possibly future outstanding issues of the ED member countries…

Dissemination - Please provide a list of all published material and the website address, indicate the

target audience and the main message conveyed

Material published/produced by EUROPA DONNA – The European Breast Cancer Coalition in 2014:

1. Breast Health Day News

2. ED 20TH Anniversary Brochure


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3. Highlights of ED’s 11th Pan-European Conference

4. Short Video Production, “EUROPA DONNA 20th Anniversary Video”

5. Annual Report and Financial Statements

6. ED Newsletter

7. Breast Health Guide: “For Your Breast Health”

8. Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis, Fourth edition: translation into Slovenian

9. Metastatic Breast Cancer Annex to the Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis, Fourth edition translation into Czech and Portuguese

10. Electronic News (4 editions)

11. Exploring the Role of Advocates in Breast Cancer Research

ED Websites: www.europadonna.org and www.breasthealthday.org

Target Audience: The primary audience is twofold. FIRST, advocates, medical professionals, scientists, health professionals, lay people active in breast cancer issues--above all members of ED National Fora; through their work at the national level they will spread the messages contained in documents such as the Short Guide to the EU Guidelines to the broader public and to politicians, health ministries, journalists and people capable of enacting change on a societal level. SECOND, women and girls of Europe, who receive important breast health information and can make informed lifestyle decisions affecting their breast health thereafter.

Key messages: 1) All women in Europe should have access to state-of-the-art early detection & treatment services for breast cancer; 2) All women in Europe should be educated on breast health and breast cancer prevention; 3) Cancer incidence can be significantly reduced through maintaining normal body weight and eating a healthy diet, engaging in moderate exercise and moderating or eliminating alcohol intake.

Purpose: To provide accurate and up-to-date scientific information and best practice implementation information to advocates; to directly (through ED websites and publications) and indirectly (through ED National Fora) disseminate important breast health information and promote healthy ways of life to the women of Europe. Thus, the results and deliverables contributed to the overall promotion of the 2nd Health Programme.

Participation in EU actions (if applicable) - Please provide your role/contribution to EU actions (i.e. projects) European Commission Expert Meeting on Cancer Control Our Executive Director, Susan Knox, attended the first European Commission Expert Group on Cancer Control Meeting held on 23-24 September 2014 in Milan, Italy, where the new 4th version of the European Code against cancer was presented. This group, representing patient organisations, national health ministries, international and



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European organisations of health professionals will work on key areas of interest to the cancer community over the next few years. Partnering in CANCON, the EU’s new Cancer Joint Action project Our Head of Policy and Public Affairs, Karen Benn, attended the second group meeting of CANCON (CANcer CONtrol), the successor project to the European Partnership for Action Against Cancer (EPAAC). CANCON will run from 2014-2016. ED is a Collaborating Partner on three work packages of the CANCON project, focused on screening, survivorship and community cancer care. Karen also attended the CANCON WP2 dissemination team kick-off meeting in Brussels on November 18, which is led by the Finnish Cancer Society. The meeting was well attended and gave a good perspective of activities and the Cancon work packages presented their status of work. European Commission- DG SANCO: In 2014 ED continued to press for a European protocol for accreditation of breast units and we continued to urge DG SANCO to expedite this project. Three-and-a-half million Euros have been allocated for the project which is being carried out by the European Commission within the Joint Research Center (JRC) located in Ispra, Italy. A new edition of the EU Guidelines will be needed in order to develop the protocol project and all experts will need to be involved in this. DG SANCO has specifically indicated that ED’s input into this is essential. As requested in EU legislation (Council conclusions on reducing the burden of cancer 10-06-2008 ), JRC plans to implement a voluntary EU Breast Unit Accreditation Project based on an EU protocol, which includes all stages of Breast Cancer Care, from screening to follow-up, and which aims to put the patient at the centre of the process and to harmonise the quality of services delivered, independently of how they are organised. Through 2013, Susan Knox and Karen Benn attended these meetings on ED’s behalf. Susan also represented ED at editors meetings of the EU Guidelines as well as liaising with EUSOMA concerning breast unit certification, etc.


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Further remarks - Please state further remarks that you find noteworthy

CONCLUSION 2014 marks the 20th anniversary of Europa Donna and provided an excellent occasion to review the progress of European breast cancer advocacy over the last 20 years. ED has played a significant role in the key areas that have had a positive impact both on breast cancer services and the dissemination of accurate information concerning the disease to women throughout Europe. These include the passing of the 2003 and 2006 resolutions as well as the 2010 written declaration against breast cancer in the EU at the European Parliament, and working with all experts involved on the EU Guidelines for quality assurance and in breast cancer screening and diagnosis. These documents have formed the basis of our advocacy work and we have dedicated significant time and effort to educational and informational programmes to ensure that the contents have been shared with health professionals and patients throughout our 46 member countries. ED’s first prevention program, Breast Health Day, is now in its seventh year. Not only has it become a dynamic way to share prevention messages with women and girls throughout the world on Facebook and Twitter, 28 or our countries are now carrying out their own programs nationally, and all consider this an important aspect of our advocacy work for the future. EBCC in Glasgow in March 2014 represented the 9th successful collaboration with EUSOMA and the EORTC in organising the EBCC meetings which began in 1998. Population mammography screening programs have been implemented in most EU countries; through our annual advocacy training courses now in their 13th year, we are helping many non EU countries begin the process of advocating and preparing for program development in their countries. Many countries have implemented high quality screening and specialist breast services; many have these services, but for only a portion of the population, and many countries still have a long way to go before these services will be available. At the Advocacy Leader Conference held in September we presented the new ED booklet Exploring the Role of Advocates in Breast Cancer Research and conducted a workshop on this topic to begin the process of enabling our national leaders to get involved in research and trials that may be conducted in their countries. The Commission ECIBC (European Commission Initiative on Breast Cancer) remains a priority for breast cancer advocates: this project will now have two working groups: one on developing a voluntary accreditation program for breast services and the other to develop revised EU Guidelines on quality assurance in breast cancer diagnosis and screening. We have interfaced with the Commission throughout the year to expedite this project and we participated in the first meeting of the Commission Expert Group on Cancer Control where we continue to advocate for a streamlined and rapid conclusion of this important project. 2014 gave us an opportunity for reflection on the past which in turn gave us direction for the future. In our 20th anniversary video (see website), ED advocates, both new and experienced, provided input on our role, our achievements and where further work is needed in the future. With over 500,000 new breast cancer cases and 143,000 deaths each year in Europe, we still have a long way to go to end this epidemic. Both short term and long term goals are essential and Europa Donna’s strategic plan for the next 5 years is designed to aim at all of these: prevention, implementation of EU Guidelines, particularly in the area of screening and specialist breast units,


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involvement in the research agenda, survivorship, and advocacy for women with metastatic breast cancer.


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Annexes - Please note that to do the assessment of your final report, we need to receive:

- 2 hard copies of the financial report - 2 hard copies of the technical report - 2 hard copies of each and all deliverables

- 1 electronic copy of the financial report (Excel) - 1 electronic copy of the technical report (Word or pdf) - 1 electronic copy of each and all deliverables of the project, individually saved in a

program appropriate (user-friendly) for posting on the Chafea website for the public deliverables, with the file name including the deliverable number. Note also that European Union funding must be visible

webgate.ec.europa.eu · final report – chafea operating grant february 2015 2 table of contents -...

Documents