final report operating grant 2013 final 27.02.2014 · 2015-01-27 · advocacy leader conference...

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Final Report

CHAFEA Operating Grant Nr:

2012 31 02

Acronym:

ED_FY2013

Title:

EUROPA DONNA General Operating Grant

Authors:

Paige Robinson and Susan Knox

Date:

24 February 2014

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 .....................................................................19

Deliverable 01: ..............................................................................................19

Deliverable 02: ..............................................................................................19

Deliverable 03: ..............................................................................................20

Deliverable 04: ..............................................................................................20

Deliverable 05: ..............................................................................................20

Deliverable 06: ..............................................................................................21

Deliverable 07: ..............................................................................................21

Deliverable 08: ..............................................................................................22

Deliverable 09: ..............................................................................................22

Operating Grant implementation.........................................................................23

Organization and planning ..............................................................................23

Evaluation .....................................................................................................46

Dissemination ...............................................................................................46

Participation in EU actions (if applicable) ...........................................................55

Further remarks ...............................................................................................57

Annexes ..........................................................................................................58


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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: 24 February 2014 ....................................................................


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Specification of the action

Operating grant title: EUROPA DONNA Operating Grant

Acronym:

ED_FY2013

Starting date of the

grant agreement:

1 January 2013

Duration of the grant

agreement (in

months):

12 months

EC co-funding:

270,680 Euro

Priority area:

Generate and disseminate health information and knowledge

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) 2013 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 2013 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 2013 Work Programme In 2013, 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 2013, 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; ED 11th Pan-European Conference—this two-day


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biennial conference responds exclusively to the educational needs of breast cancer advocates, and is unique in Europe in this regard.

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: 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 2013 we translated the Short Guide into two new languages, Czech and Croatian, and reprinted in English, bringing the total to 17 language versions. In 2013 we produced and widely disseminated the following documents to ensure transfer of information: Short Guide to the EU Guidelines translations and reprints, Electronic News, Breast Health Day News, Highlights of ED’s Advocacy Leader Conference (three documents), ED Newsletter, 2013 ED Brochure, Annual Report & Financial Statements, and Guide to Breast Health/For Your Breast Health. 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 2013 (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 ongoing 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. 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 has informed our formulation of a new Strategic Plan. ED holds two major Board meetings each year, both 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.

Internal evaluation per activity:

ED Advocacy Training Course & 11th Pan-European Conference: Planning Evaluation—regular reviews, including time plans and quantifiable indicators, between ED CEO and ED officer responsible. The success and impact of the course and the conference are measured by two Event Evaluations.

Publications & Websites: ED regularly surveys its members about the impact of the Info Programme using quantifiable indicators, their information needs and if those are met.


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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 2013 Work Programme ED selected a Team of External

Evaluators who conducted an evaluation of the 2013 Work Plan; this team comprised 3 Past-ED Board members who are all 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 2013 was through ED’s websites 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 new Electronic News publication.

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 and publications) 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 2013 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 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


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national levels by member Fora, they contribute to EPAAC’s 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 2013. 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.

11th Pan-European Conference:


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Advocacy Training Course 2013:


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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 20 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 BC services are delivered in line with the EU Guidelines. ED activities therefore address the European Partnership for Action Against Cancer pillar of identification and promotion of good practice in cancer-related healthcare; ED is a Collaborating Partner on Work Packages 5 & 7. ED pursues its objectives by developing advocacy programmes at European and national levels. In 2007 ED undertook a STRATEGIC REVIEW which led to the formulation of a 5-YEAR STRATEGIC PLAN. ED’s 2013 activities continued that strategy while ED’s leadership finalises a NEW STRATEGIC PLAN. ED’s 2008-2012 Strategic Plan identified 3 major OPERATIONAL OBJECTIVES which we continued during transition year 2013: 1) strengthen ED’s capabilities; 2) intensify country support; 3) intensify European presence. These operational objectives are addressed by ED’s ongoing 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; not in 2013) —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; in 2013,


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CORE) this 2-day biennial conference responds exclusively to the needs of breast cancer advocates; NATIONAL REPRESENTATIVE DAY (Objectives 1, 2; not in 2013)—Leaders of ED’s National Fora meet for updates on advocacy topics and managing a national non-profit (held when needed). 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 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. 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. 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 ongoing input into new health strategies to ensure that BC 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 2013, including a

time table with the list of activities and events scheduled for the year 2013

ED’s 2013 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 over numerous years, and consistently updated and improved to best meet organisational objectives. Specific actions in 2013, following ED's 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 is: BREAST HEALTH DAY (project).)


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Activities, Methods and Means: • Through the ADVOCACY TRAINING COURSE, PAN-EUROPEAN CONFERENCE, ED

PUBLICATIONS 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, PAN-EUROPEAN CONFERENCE, 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, PAN-EUROPEAN CONFERENCE 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, ELECTRONIC NEWS, BREAST HEALTH DAY NEWS, HIGHLIGHTS OF ED’s ADVOCACY LEADER CONFERENCE, ED NEWSLETTER, 2013 ED BROCHURE, ANNUAL REPORT & FINANCIAL STATEMENTS, GUIDE TO BREAST HEALTH/”FOR YOUR BREAST HEALTH”

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

Outcomes:

In carrying out our 2013 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

RESPONSIBLE

MONTHS (M1=Month 1, January, etc.)

European Breast Cancer Advocacy Training Course

Karen Benn Work done in M2,M3,M6-12; Course dates: 15-17 November

11th Pan European Conference

Daniela Pirisi Work done in M2-12; Conference dates: 19-20 October

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

Karen Benn Work done in: M1-12


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Short Guide to the European Guidelines

Barbara Klein Work done in: M1-12; Published in December

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 2013 Brochure Susan Knox Work done in: M1-4; Published in April

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 Board Meetings Susan Knox Work done in: M1, M5-7, M9-10, M12; Meetings held in Jan., June, Oct.

ED General Assembly Susan Knox Work done in: M9-10 Meeting held in October

ED Administration Daniela Pirisi Work done in: M1-12 Highlights of Advocacy Leader Conference (not initially scheduled as such, but ultimately divided into 3 separate documents on separate subjects with permission from CHAFEA)

Susan Knox Work done in: M1-9; Published in April and Sept.

Electronic News (6 scheduled, 4 published with permission)

Karen Benn Work done in: M1-12; Published April, May, Aug., Dec.

MBC Annex to Short Guide to the European Guidelines (not previously scheduled, added with permission of CHAFEA)

Susan Knox Work done in: M4-6; Published November

Synergies of the organisation's activities with the priorities of the WP 2012 including a description of the EU added value of these activities

ED’s work directly contributes to WP2012 priorities in several key ways. In terms of HEALTH INFORMATION, we EXCHANGE KNOWLEDGE AND 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. EXCHANGE OF KNOWLEDGE AND BEST PRACTICE also occurs through ED’s meetings and conferences (Pan-European Conference, Advocacy Training Course, GA, 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


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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 AND SOCIAL EXCLUSION, thus contributing to the FLAGSHIP INITIATIVE AGAINST POVERTY. 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 —HEALTH DETERMINANTS) and are further spread on the local and national levels by 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 PROMOTE HEALTH AND PREVENT DISEASES. 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. ED’s work therefore addresses the Commission’s priority of having A HEALTHY WORKFORCE. *An average of 20–30% of BC cases in Europe occur in women when they are younger than 50 years old; 33% occur at age 50–64 and the remaining cases in women above this age. (*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.) Our programmes also provide synergies with the Commission’s DIGITAL AGENDA, applying information and communication technology in the area of health in that all of our published work is made available on our two websites. ED also has its own Facebook page and Twitter account to keep stakeholders involved in our work and through which they can add to the dialogue. Further, BHD 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. 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: KNOWLEDGE AND 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).


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Dissemination strategy (external dissemination)

The primary method of results and deliverables dissemination to stakeholders and the broader public in 2013 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 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, ECCO/ESMO conferences, Milan Breast Conference, IMPAKT, ABC2, 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 new 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 is distributed throughout the year; BHD News in January; Highlights of ED’s Advocacy Leader Conference in April and September (divided into 3 separate publications); ED Newsletter September; ED Brochure from April throughout rest of year; Annual Report and Financial Statements in March; Electronic News by email in April, May, August and December.

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 has informed our formulation of a new Strategic Plan (years 2014-2018). ED holds 2 major Board meetings each year, both 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 Nat Reps 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 & PAN-EURO CONFERENCE: Planning Evaluation—regular reviews, including time plans and quantifiable indicators, between ED CEO and ED officer responsible. The success and impact of the course and the conference are measured by 2 Event Evaluations – each attendee completes an evaluation form in


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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 or conference helped achieve their objectives. Evaluation assessments are then produced and sent to ED Board and stakeholders as appropriate.

PUBLICATIONS & WEBSITES: ED has 2 different levels of evaluation for publications; ED regularly surveys its members about the impact of the Info 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 2013 Work Programme ED selected a team of External Evaluators who conducted an evaluation of the 2013 Work Plan; this team comprised three Past-ED Board members who are all breast cancer experts with experience of running large non-profit organisations (Deirdre O’Connell (Ireland), Ellen Verschuur (The Netherlands), and Bettina Borisch (Switzerland). 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 2013 activities, i.e. On a scale from 1–10 (10 most positive), how do you judge the quality of x program in 2013?; 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: WHO’s International Agency for Research on Cancer (IARC), European Cancer Network (ECN), the European Organisation for Research & 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 & Diagnostic Services (EUREF), European CanCer Organisation (ECCO), institutions of the European Community such as the European Commission and the European Parliament, at both committee and MEP level. With all of these partners we have worked to establish standards for early detection, diagnosis and treatment of breast cancer. We also work with the following research institutes to improve understanding of breast risk factors and improving patient support: IARC, EORTC, BIG and EUSOMA.

Other partners with whom ED has collaborated include European Oncology Nursing Society (EONS), St Gallen Consensus Conference on Clinical Guidelines, International Society of Geriatric Oncology (SIOG), European School of Oncology (ESO), European Institute of Oncology (IEO), Europa Uomo, European Cancer Patients’ Coalition (ECPC).


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ED was a founding board member of the European Patients’ Forum (EPF) where it remains an active member. ED is a member of the European Public Health Alliance (EPHA) and the new EU-funded European Partnership for Action Against Cancer.

ED's CEO, Board members, and Head of Policy represent ED on numerous other ongoing projects: ED serves on the Scientific Committee of BIG (Breast International Group) and the Steering Committee of the MINDACT and AURORA clinical trials. ED represents the patient advocacy perspective on the European Commission’s Joint Research Centre project for the accreditation of breast services. ED has also been a member of 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.

In 2013 ED also agreed to participate in Breast International Group’s academic programme called “AURORA”; by using the latest technologies to “molecularly screen” metastatic breast cancer patients’ tumors, the project aims to analyse the mechanisms of resistance to treatment, to understand the sensitivity to treatment and to track the natural progression of the disease.


Month Year I 19

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

(eg. report, book, website

etc.)

Publication

Delivery date to CHAFEA 4 February 2013 (by email—hard copies followed by surface mail)

Specific remarks on this

deliverable

This document provided an overview of the most recent Pan-European Breast Health Day campaign (2012) 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 Highlights of ED’s 2012 Advocacy Leader

Conference

Nature


etc.)

Publication

Delivery date to CHAFEA 4 April (2 publications) and 4 September 2013 (1 publication) (by email—hard copies followed)


deliverable

With permission from the CHAFEA, we split this into 3 separate publications as the topics covered by the ED Advocacy Leader Conference were highly diverse. The 3 publications were: “Building our Organisations for the Future”, “Understanding Health Technology Assessment and sustainability of health system financing”, and “Perspectives on Advocacy for Women with Metastatic Breast Cancer”. These documents recount the major points covered during the fall 2012 ED Advocacy Leader Conference. (See below in “Changes” section for more information)



project database?

Yes


Month Year I 20

Deliverable 03:

Title of deliverable 2013 ED Brochure

Nature


etc.)

Publication

Delivery date to CHAFEA 29 April 2013 (by email—hard copies followed)


deliverable

This brochure lists key initiatives undertaken by ED, European cancer statistics and current priorities for ED’s evidence-based advocacy work



project database?

Yes

Deliverable 04:

Title of deliverable ED Annual Report and Financial Statements

Nature


etc.)

Publication

Delivery date to CHAFEA 21 March 2013 (by email—hard copies followed)


deliverable

ED’s Annual Report was first published in 2008 in an effort to make our activities transparent to all. In 2013, ED published an Annual Report and Financial Statements that summarize 2012 activities.



project database?

Yes

Deliverable 05:

Title of deliverable ED Newsletter

Nature


etc.)

Publication

Delivery date to CHAFEA 4 September 2013 (by email—hard copies followed)


deliverable

The ED Newsletter includes information on ED’s priorities, plans and work; the latest research findings on breast cancer; updates on European-level meetings; interviews of leading experts; issues on topics such as the EU Guidelines and lifestyle factors.

Can the deliverable be yes


Month Year I 21


project database?

Deliverable 06:

Title of deliverable Short Guide to the European Guidelines for

Quality Assurance in Breast Cancer Screening

and Diagnosis

Nature


etc.)

Publication

Delivery date to CHAFEA 6 December 2013 (by email—hard copies followed)


deliverable

ED’s 32-page booklet summarizing the over 400-page EU Guidelines is our advocates’ primary advocacy tool. Reprints in English language and translations into Czech and Croatian.



project database?

Yes

Deliverable 07:

Title of deliverable Electronic News

Nature


etc.)

Email publication

Delivery date to CHAFEA 4 September (3 editions) and 20 December 2013 (1 edition); (by email—hard copies followed)


deliverable

A new initiative, ED planned to publish 6 editions in 2013. With permission, we instead published 4 (and added the unnumbered deliverable below). Included were sketches of projects and programmes ED is planning, engaged in, and recently finished. They also provided links to additional information and resources. (See below in “Changes” section for more information)



project database?

Yes


Month Year I 22

Deliverable 08:

Title of deliverable Final Report

Nature


etc.)

report

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


deliverable

Final report to CHAFEA on 2013 grant.



project database?

Yes

Deliverable 09:

Title of deliverable Metastatic Breast Cancer: Annex to the Short

Guide to the European Guidelines for Quality

Assurance in Breast Cancer Screening and

Diagnosis, Fourth edition

Nature


etc.)

Publication

Delivery date to CHAFEA 6 December 2013 (by email—hard copies followed)


deliverable

THIS IS AN UNNUMBERED DELIVERABLE which was added with CHAFEA’s permission. 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. (See below in “Changes” section for more information)



project database?

Yes


Month Year I 23

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 2013 INTRODUCTION—AIMS AND OBJECTIVES ED’s 2013 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 2013 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 2013 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.


Month Year I 24

A Summary of the Execution of All Core Programme Tasks In 2013, 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.

2013 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 European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis (henceforth referred to as the EU Guidelines), a document published by the European Commission 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 57 advocates in Milan, Italy from 15 to 17 November, 2013. 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. 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 2013.


Month Year I 25

Immediately upon conclusion of the course, ED conducted an internal evaluation of Advocacy Training. Results discussed below in evaluation section.

11th PAN-EUROPEAN CONFERENCE

This biennial conference is the only one of its type in Europe, catering exclusively to the needs of breast cancer advocates. Hosting approximately 250 participants, the EUROPA DONNA Pan-European Conference enlightens advocates on the latest developments and directions in breast cancer prevention, early detection, research and treatment. Armed with this information, advocates return to their countries better able to fight for the women they serve. It is essential to bring ED’s National Representatives from our 46 member countries to this event so that they are trained on topics that are important to advocacy in their home countries; as such each ED Forum is given a bursary so that representatives from all countries may attend regardless of their financial standing. The Pan-European Conference is open to all, and we are always pleased when representatives from European countries that are not yet members of EUROPA DONNA are in attendance. This enables us to help new countries understand how to set up an ED Forum in their countries and what are the primary goals of European breast cancer advocacy, especially those outlined in the EU Guidelines. In this way we extend the coverage of breast cancer advocacy further in Europe. Our 11th Pan-European Conference was held on 19 and 20 October in Prague, Czech

Republic, where some 230 breast cancer advocates and specialists from 36 countries

gathered to discuss advocacy and “Ensuring Quality Services and Equal Access” to

breast cancer services. In keeping with this theme, the keynote speaker Krzysztof

Maruszewski, Director of the European Commission Institute for Health and Consumer

Protection, Joint Research Centre (JRC) in Ispra, Italy, assured advocates that the JRC

Breast Cancer Initiative is striving to create a performance-based European quality

assurance scheme and accreditation of breast cancer services. This is a key advocacy

priority for the Coalition and is fundamental to ensuring that women across the

continent have access to equal, high-quality breast cancer care, including screening,

diagnosis and treatment. Throughout our two-day conference, invited experts

discussed additional areas that are essential to breast cancer advocacy today:

personalised medicine, advances in treatment, mammography screening programmes,

pathology and diagnosis, prevention of breast cancer through healthy lifestyles, and

survivorship. Advocates then shared experiences and strategies in four workshops on

advocacy and survivorship, advocacy for young women, special populations and

women with metastatic disease. (see ATTACHMENT 2 for conference agenda and

brochure).

A highlights report on the conference will published and disseminated in early 2014. It

can be used by 1) conference attendees, as an aid to pass on information to other

advocates and to the public in their countries; 2) advocates who were not able to

attend the conference but want to be informed on the topics that were covered; and

3) anyone in the public who is interested in breast health matters. The document will

also be posted on ED’s website www.europadonna.org.


Month Year I 26

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 2013, ED produced and distributed the following:

EUROPA DONNA 2013 PUBLICATIONS • DELIVERABLE 1: Our 4-page Breast Health Day News provided an

overview of the 2012 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. 2,200 were printed and

distributed (approximately 1,850 were mailed to ED fora, Board members and

ED stakeholders), the rest were distributed at meetings and upon request

• DELIVERABLE 2: ED originally intended to publish one document entitled

Highlights of ED’s 2012 Advocacy Leader Conference, of 16 pages,

recounting the major points covered during the conference, which took place

on 22 September 2012. The Advocacy Leader Conference is held ad hoc as

deemed necessary (usually once every two years), and it caters exclusively to

the needs of ED’s most experienced breast cancer advocates. The 2012

conference was entitled Building our Organisations for the Future and

focused on three diverse topics: European cancer burden, Health

Technology Assessment (HTA) and government healthcare decisions;

Non-profit management today; and Perspectives on Advocacy for

Women with Metastatice Breast Cancer. The keynote speech was

delivered by Panos Kanavos, Reader in Health Policy, London School of

Economics on HTA. ED’s CEO Susan Knox and Board President Elizabeth

Bergsten Nordström delivered the presentation on managing non-profits and

the subject was then addressed in workshops in which ED fora discussed the

main issues that they need help in resolving locally (i.e. main

problems/barriers to be overcome). Finally, a workshop was held on the topic

of Support and advocacy for metastatic breast cancer patients locally

and nationally. Each facilitator started off by giving an idea of what MBC

advocacy work is taking place in her own country followed by group discussion

of activities that are going on, or planned for the future to help women with

MBC. Because these topics were so diverse with potentially diverse audiences,

it was decided to split the publication into three parts. ED was given

permission to do this by CHAFEA Project Officer Antoinette Martiat. The

resulting documents are: Understanding Health Technology Assessment and

sustainability of health system financing: Access to new treatments now and in

the future: what advocates need to know (this 3-page publication was

distributed by email to ED Board and National Representatives); Building our


Month Year I 27

Organisations for the Future (this 8-page publication was distributed by email

to ED Board and National Representatives); and Perspectives on Advocacy for

Women with Metastatic Breast Cancer (This is a 4-page publication. 2,000 were

printed and were presented and distributed at the ABC2 conference in Lisbon,

the rest continue to be distributed at meetings and upon request).

• DELIVERABLE 3: We created a 4-page EUROPA DONNA Brochure entitled

“EUROPA DONNA 2013”, which highlighted EAHC funding and provides a few

basic breast cancer statistics, an overview of ED’s current main priorities, a list

of important 2013 projects and initiatives, along with contact information on

country members. 1,000 were printed and continue to be distributed at

meetings and upon request.

• DELIVERABLE 4: This is a new initiative begun in 2008 in an effort to make

our activities transparent to all. In spring 2013 ED published an Annual

Report and Financial Statements that summarise the previous year’s

activities. Approximately 315 Annual Reports were printed and mailed to ED

fora, Board members and ED stakeholders. The remaining 135 copies continue

to be distributed upon request; both the Annual Report and Financial

Statements are posted on ED’s Website along with other ED publications

• DELIVERABLE 5: 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 2013 the 26-

page ED News featured an interview with Dr. Nick Perry on the topic of

screening, imaging and risk management; an interview with Dr. Clive Wells

describing what is new in pathology, diagnostic methods, molecular testing and

biological markers; an interview with Dr. Robin Wilson on the latest in specialist

breast units and the multidisciplinary team; an essay by breast cancer survivor

Marta Kostrová on her experience with breast cancer and advocacy; essays

from ED President Elizabeth Bergsten Nordström and CEO Susan Knox; news

on BHD and other ED initiatives, ED’s 2013 European policy activities, and

reports from member countries. 2,000 were printed and continue to be

distributed (approximately 1,150 were mailed to ED fora, Board members and

ED stakeholders), the rest are being distributed at meetings and upon request

• DELIVERABLE 6: 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


Month Year I 28

over 400-page Guidelines had been published in 15 languages (including

English) through 2012; it has become our advocates’ primary advocacy tool.

In 2013 we continued translations into two more languages: Croatian and

Czech. Due to demand for them, we reprinted English booklets in 2013. The

reprints were updated to include information on the Written Declaration on the

Fight Against Breast Cancer in the European Union (0071/2009).

Short Guide Croatian 2,200 printed and the vast majority were distributed to

ED Croatia; the rest continue to be distributed at meetings and upon request Short Guide Czech 2,700 printed and the vast majority distributed to ED Czech

Republic; the rest continue to be distributed at meetings and upon request Short Guide English reprint 750 printed and continue to be distributed at

meetings and upon request

• DELIVERABLE 7: 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’s original

plan was to publish six Electronic News per year, but with permission from

CHAFEA Project Officer Antoinette Martiat we instead published four. They

were sent on the following dates: 11 April, 28 May, 1 August and 20 December

and cover in brief numerous topics, including (to name only a few) ED’s 11th

Pan European Conference, ED’s publication The Advocate’s Guide to

Understanding Breast Cancer Research, a 2-day workshop attended by ED on

an Accreditation Scheme for Breast Cancer Services and the further

development of EU Guidelines convened by the European Commission’s Joint

Research Centre in Ispra, Italy.

• UNNUMBERED DELIVERABLE (added to Core Programming with the

permission of CHAFEA Project Officer Antoinette Martiat after the start

of the year): This 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 (a very important subject for breast

cancer advocacy) as presented in the EU Guidelines. This annex can be easily

translated by ED members and this process has already begun in several

countries.

In 2013 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) 2013 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. 2,200 were printed and are distributed at various


Month Year I 29

meetings, a Breast Health Day information event at the European Parliament in

October and at ED’s Advocacy Training Course in November. 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; a discussion forum is available for ED National Representatives, Board members and Head Office staff to bring up issues and ideas; links are provided to ED country members’ websites and email addresses and to useful resources from other organisations. 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.

2013 Breast Health Day Campaign Materials

Breast Health Day Video: The snappy Breast Health Day animated video travelled

the globe, demonstrating how to make healthy choices. It features cartoon examples

of less healthy behaviour and the healthy choices that can replace them. Based on

images, the video was created for easy use in all countries, by 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 2013 were:

Breast Health Day Pledge: To get people actively involved in the BHD campaign and

thinking about healthy lifestyles, women were able to send in healthy messages

through a web application on the Breast Health Day website and also share it through

the social networks. The messages were added to a tag cloud.

Breast Cancer Facts Videographic: An animated video gave a lively presentation of


Month Year I 30

breast cancer facts and statistics.

Breast Health Day Poster and Mini-diary: The Breast Health Day poster and Mini-

Diary made available to ED for a through the BHD website were translated and

published in Czech, Italian, German, French, Russian, Swedish and Tajik.

Banners and Website Badges: Three banners and badge sizes were available, again

through the BHD website, for people to add to their websites to promote the BHD

message.

EUROPA DONNA’s activities could also be followed in 2013 (and 2014) through our Facebook page and Twitter account at http://www.facebook.com/EuropaDonna and http://twitter.com/BreastHealthDay. And in 2013 our recent BHD videos could (and can still) be seen on YouTube at http://www.youtube.com/BreastHealthDay. Revamped Website Project for http://www.europadonna.org/: In 2013 the newly restyled and refreshed ED website was launched with technical improvement/upgrade of the “content management system” (CMS). The CMS we had previously been using could not be updated any longer as it had been written for ESO’s Cancerworld portal more than 10 years ago and ED had been part of the portal; this CMS is also extremely outdated so we needed to switch to a new CMS. In 2012 ED’s Daniela Pirisi got in touch with two additional web agencies and received quotes for this project and analysed which one is the best for our needs. Finally, the firm Sintattica was chosen as it promised the best solutions vs. price. The following changes were finalised in March 2013: Technical aspects: Change of CMS - switching to an “open-source” system called Web Press, which is well-supported technically. ED can now continue to update the contents of the website in-house. Graphical changes:

• General restyling of the graphics and colours of our website giving it a fresher

and more modern look

• Repositioning of the menu items

• Change/add photos

• Insert search engines inside our website to find the keywords on the web-

pages and also in the PDF documents (all our brochures, newsletters,

conference proceedings, annual reports etc)

• Insert moving images on our homepage to make the home page less static

• Interactive map with links to our member countries.


Month Year I 31

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 ongoing research into various issues under discussion and providing ongoing 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 European Partnership for Action Against Cancer (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 2013 included: Clinical Trial Committees—Breast International Group (BIG), MINDACT: In 2013 ED continued to serve on the Steering Committee of the MINDACT trial as well as the BIG Scientific Committee. ED met with the BIG management team in early 2012 and they subsequently proposed research areas where ED could provide advocacy input in 2012 - examples of areas of concern to patients and advocates are tissue banking and patient consent forms. ED executed an agreement with BIG to participate in a number of important projects for the period of 2012-2014. ED will continue serving on the BIG Scientific Committee as well as the following BIG projects:

• MINDACT Steering Committee: CEO Susan Knox

• AURORA Steering Committee: Susan Knox, Head of Policy Karen Benn

• AURORA Legal/Ethics Committee: ED Past President Ellen Verschuur with ED

President Elizabeth Bergsten Nordström as alternate

• OLYMPIA Trial Steering Committee: Elizabeth Bergsten Nordström

• BIG Ad Hoc Advice: Susan Knox and Karen Benn will review documents as

requested; they will also share the documents with one or two ED Board

members from different countries to provide different cultural perspectives

when appropriate

• BIG NABCG Survivorship Working Group: Elizabeth Bergsten Nordström with

Susan Knox as alternate

European Patient Forum

We are on-going members of EPF and served on its Executive Committee for the first five years. ED Head of Policy Karen Benn attends the annual conference and other meetings.


Month Year I 32

AURORA Project Collaboration (completed in 2013)

Europa Donna was invited by the AURORA project to join its Advisory Board, along with IARC and a member of the EPAAC (European Partnership for Action Against Cancer) at the specific request of the EAHC (the Executive Agency in charge of projects administered under the budget of DG SANCO, the health division of the European Commission). Karen Benn serves on the Advisory Board. Karen Benn continued as an advisor to the EU-funded AURORA project on cervical screening into the early part of 2013.

European Partnership for Action Against Cancer (EPAAC)

ED is a collaborating partner in two of the European Commission’s EPAAC Work Packages: WP5 Prevention, and WP7 Healthcare. ED Head of Policy Karen Benn follows both Work Packages and attended the final EPAAC meeting in Lubjana in late November.

European Commission- DG SANCO: In 2013 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. Susan Knox and Karen Benn attend these meetings on ED’s behalf. Susan

also represents ED at editors meetings of the EU Guidelines as well as liaising with

EUSOMA concerning breast unit certification, etc.

• ECCO -European CanCer Organisation

ECCO was officially inaugurated at the ECCO 14 conference in Barcelona in September 2007. They will continue as they have in the past to organize events such as EBCC and ECCO in addition to all other activities. ED is a member of the following ECCO committees:

• ECCO Advisory Council

The Advisory Council gathers one representative from each member society of ECCO (founding, full and Advisory members) once a year and it is the opportunity for the ECCO Board to inform of the on-going activities, but also to learn and interact with its member societies and seek their advice. The ED President represents ED on this council. Elizabeth Bergsten Nordström has been designated.

• PAC (Patient Advisory Council)


Month Year I 33

Along with the new organization there is a new patient advisory council (PAC) on which ED serves. ED’s former Vice President Sema is currently ED’s representative on the council. This group works on ECCO/ESMO Patient Seminar.

ECCO-ESMO-ESTRO European Cancer Congress

We were actively involved in the “Patient Advocacy Square” patient track of the ECCO-

ESMO-ESTRO European Cancer Congress, held from 28 September to 1 October 2013

in Amsterdam, The Netherlands. This is the first time at the European Cancer

Congress that patient advocacy organisations were assigned a specific place in the

exhibition area to promote their resources. ED had a stand and distributed materials.

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.

Advanced Breast Cancer Second International Consensus Conference (ABC2)

We served on the newly developed Advocacy Committee for ABC2, held 7-9 November

2013 in Lisbon, Portugal. ED’s CEO, Susan Knox, participated in several

teleconferences with patient advocate committee members from four continents to

prepare the advocacy sessions. The conference included advocacy satellite sessions on

identifying the challenges in meeting the needs of women with advanced/metastatic

breast cancer across the globe; how EU Guidelines and which of them can be used to

meet these challenges; and the development of an ABC2 Advocate Action Plan. ED’s

President Elizabeth Bergsten Nordström was the advocacy representative on the ABC2

Consensus/Voting Panel. Moreover, ED had a stand at the conference and several

Board members were in attendance along with Susan Knox and Head of Policy Karen

Benn.

Early Breast Cancer Trialists’ Collaborative Group (EBCTCG)

ED President Elizabeth Bergsten Nordström is on the Steering Committee.

PICTURE Project: The Patient’s Perspective on Predicting Post-surgical

Aesthetics

We represented the patient’s perspective on Advisory Board of the PICTURE (Patient Information Combined for the Assessment of Specific Surgical Outcomes in Breast Cancer) Project, a new FP7 research project which has been approved by the European Commission. The PICTURE collaboration, involving a number of academic institutions from various countries, plans to develop a prototype of a digital tool that could predict how an individual patient’s breast will look post-surgery. In June, our Executive Board met with the technical advisor of the project to provide input on the patient’s perspective.

Other: Board members have had a role in various other meetings but these may be one-time events. ED’s participation may or may not be requested in the future. ESO Masterclass in Cancer Patient Advocacy:

Working Towards Stronger and more Effective Advocacy in Europe May 23-25, 2014.


Month Year I 34

Susan Knox on Committee EURECCA European Registration of Cancer Care project

Susan Knox is ED’s representative on this project and Karen Benn attended a meeting on this at ECCO in 2013.

In January 2013, the ED Board reviewed our ED EU Advocacy Breast Cancer Presence and Calendar of Meetings scheduled for the year; at the June Board meeting an updated calendar of meetings was reviewed and discussed; at our January 2014 Board meeting the meetings attended by various Board and staff members were discussed as appropriate and evaluated.

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 EAHC.

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 2013, 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 2013, 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, Russia, Slovakia, 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, June and October 2013, 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 2013 was no exception. ED was successful in identifying a new National Representative for ED Russia and ED Slovakia. In both cases, this was done following leads for re-activating these countries via any contacts that President, Executive Director, Head of Policy or Board members made at international meetings.


Month Year I 35

Head of Policy Karen Benn then followed up on those leads with emails and phone calls and in both cases a “dormant” forum was re-activated by finding new appropriately-experienced and interested people to take on the running of the ED forum in the country. In other cases, various Board and staff members have identified potential new people

or groups, attended meetings, traded correspondence, and they will continue to do so

until the issue is resolved with each country. In 2013, ED was able to assist the ED

Netherlands with a potentially damaging rupture and it is now a stable forum. This

was achieved though telephone and personal meetings over a four month period with

the individuals involved: ED staff, Board members and our ED Netherlands National

Delegate. Communicating with all parties concerned to understand background of the

problem. Instead of starting up a new ED group, the existing forum will continue to

carry out its national projects as well as keeping a key ED leader as the National

Delegate to serve on European committees for ED.

The ED Head Office and Board also worked diligently to identify women to get involved in ED Germany in 2013, and it continues to make progress toward this goal in 2014. Likewise, ED Board and the CEO continue to work to identify potential women or groups to get ED Lithuania and ED Moldova active again. ED staff has a possible candidate to restart the ED Serbia forum. Sharing of Member Country Publications 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 . 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 2013, ED infrastructure operated in the following way:

BOARD MEETINGS AND GENERAL ASSEMBLY The ED Board of Directors and CEO met three times in 2013 (full meetings in January and June and a brief meeting in October) to discuss matters of the organisation. At the January meeting, they decided on and approved a programme and budget for 2013. 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 2013.) In June and October 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.


Month Year I 36

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 a General Assembly during the Pan-European Conference in October to update ED members on the Head Office’s work through the CEO’s report and to vote on one Board positions and approve the new ED five year Strategic Plan (2014-2018). At this meeting, 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. As always, time was allocated for members to raise issues and questions and for discussion. Executive Board Seminar on the Role of Advocates in Breast Cancer Research

Finally, our Executive Board gathered in Milan in June 2013 for a seminar aiming to

elucidate the specific areas in which advocates can and should make contributions to

clinical trials and research, and to outline the type of training the Coalition should

provide so that its advocates can evaluate trials and provide meaningful input into

committee meetings and/or documents related to research. At the seminar, Olivia

Pagani, an oncologist with much clinical trial experience, was the scientific leader. She

gave an overview of the clinical trial process and issues of relevance to advocates and

answered questions throughout. Our Executive Director, Susan Knox, then described

our past and ongoing role in the MINDACT trial run by Breast International Group

(BIG), a non-profit network of global research groups. Maggie Wilcox, a former nurse,

breast cancer survivor and board member of the UK organisation Independent Cancer

Patients’ Voice, gave an account of her organisation’s activities, which involve

providing the patient’s perspective for many research initiatives. The booklet resulting

from the seminar highlights the presentations and discussions, and next steps to

further our advocacy involvement in research.

EUROPA DONNA Strategic Plan: 2014-2018 In 2012-13 we undertook a review of our activities with a view to setting out a Strategic Plan for 2014-2018. Our Head of Policy/Public Affairs, Karen Benn, sought opinions and information from stakeholders and similar organisations. This entailed: a desk review of similar organisations’ work and websites which were compared to ED; a survey of ED’s Board, National Representatives and Delegates; input from General Assembly (GA) workshops. In January 2013, the ED Board analysed the results to date and began formulating a new plan based on those results. In the intervening period we completed the final parts of the analysis, which included a survey answered by the heads of ED’s key collaborators and partnering organisations (EUSOMA, ECCO, EORTC, ESO, EPF, etc.), in which they were asked to do a SWOT (strengths, weaknesses, opportunities and threats) analysis of ED and identify what they believe are the most important areas of focus for the next five years; and an analysis of the results of an ED members’ survey on their structure and governance. The draft developed for January was then further refined to include these final pieces of research and was voted upon by the ED Executive Board at its June 2013 meeting. It


Month Year I 37

was then thoroughly reviewed at the October 2013 GA meeting. Our activities for 2014 will follow the new strategy while continuing to build on the outcomes and results of activities in 2008-2013.

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 part-time staff of five and is headed by its CEO Susan Knox, a breast cancer survivor. Other staff are Karen Benn, Head of Policy/Public Affaris; 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 2013 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 EAHC Operating Grant.

As was shared with and approved by ED’s EAHC contact Antoinette Martiat, on 1 May 2013 ED staff member Barbara Klein finished a maternity leave that began in September 2012; it was decided that other staff members would temporarily take over aspects of Barbara’s job to minimize organisational impact and maintain a good work flow due to the fact that ED is a complex organisation and it would be difficult and time-consuming for this small office to train up a new person to do Barbara’s maternity cover. As such, everyone at ED took over some pieces of Barbara’s job, especially Paige Robinson, who added 15 hours to her work week to focus on Barbara’s responsibilities and thus greatly added to her Core working hours (compensating for Barbara who recorded no working hours). In addition, Karen Benn took over oversight of ED’s Breast Health Day website and social media campaigns in Barbara’s absence. Daniela Pirisi headed up relations with local vendors. Susan Knox’s hours were higher than anticipated because she worked on Core projects not anticipated previously. For example, she arranged the special June workshop for the ED Board on the Role of Advocates in Breast Cancer Research, wrote the agenda and invited the speakers. She also devoted time to the Picture Project and worked a great deal with BIG (the Breast International Group) on projects. With regard to the 11th Pan-European Conference she worked a great deal on the organisation of the conference and liaising with the speakers and host country, and she worked with the Press in the Czech Republic to publicize the conference. Finally, in 2013 Susan Knox devoted numerous hours to resolving an issue with one of our member countries.


Month Year I 38

List of ED’s 2013 Activities EDUCATION

EUROPA DONNA Annual Breast Cancer Advocacy Training Course EUROPA DONNA 11TH Pan-European Conference 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 Breast Health Day News Highlights of ED’s 2012 Advocacy Leader Conference:

• European cancer burden, Health Technology Assessment (HTA) and

government healthcare decisions;

• Non-profit management today; and

• Perspectives on Advocacy for Women with Metastatic Breast Cancer

2013 EUROPA DONNA brochure ED Annual Report and Financial Statements EUROPA DONNA Newsletter A Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis (translations into 2 new languages and reprints/updates in 1 language) Electronic News (4 editions) Supplement to ED's Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis covering metastatic disease Guide to Breast Health “For Your Breast Health” WEBSITES www.europadonna.org www.breasthealthday.org ADVOCACY: COLLABORATION AND NETWORKING

Parliamentary and Policy Activities Meeting with the European Commission’s Joint Research Centre on the accreditation of breast services Breast Health Day Information Day at the European Parliament Breast Cancer Exhibition at the Council of Europe, Strasbourg European Partnership for Action Against Cancer (EPAAC) AURORA Project Collaboration European Patient Forum Annual General Meeting and Conference Picture Project: The Patient’s Perspective on Predicting Post-surgical Aesthetics SUMMARY OF SEMINARS, CONFERENCES AND OTHER EVENTS ATTENDED:


Month Year I 39

During 2013 EUROPA DONNA served on the following committees:

Clinical Trials

BIG (Breast International Group) Scientific Committee MINDACT Steering Committee ALLTO Steering Committee AURORA (BIG) Early Breast Cancer Trialists’ Collaborative Group (EBCTCG) Steering Committee During 2013 EUROPA DONNA participated in the following organisational

activities:

Policy

Council of Europe, Breast Cancer Exhibition, Strasbourg European Parliament Information Day for Breast Health Day European Patients’ Forum European Public Health Alliance ECCO − Patient Advisory Council European Partnership for Action Against Cancer (EPAAC) Open Forum Joint Research Centre: Breast Cancer Service Accreditation European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis Editorial Board meeting

Conferences

EPF Conference Towards Active Patients’ Involvement in Healthcare with a Reflection on Brain Disorders, Self-management and Empowerment ECCO-ESMO-ESTRO European Cancer Congress 11th EUROPA DONNA Pan-European Conference Advanced Breast Cancer Second International Consensus Conference (ABC2) EUROPA DONNA Advocacy Training Course ECCO Oncopolicy forum September 2013 ESTRO meeting Other Meetings

PICTURE Project: The Patient’s Perspective on Predicting Post-surgical Aesthetics Harvard Faculty Club, USA, seminar for cancer patient organization CEOs EBCC-9 Organising Committee EBCC-9 Executive Scientific Committee International Experience Exchange for Patient Organizations EBC Council AURORA Cervical Screening Project Advocacy Committee for ABC2 EUROCROF Conference – The Future of Europe in the worldwide scene of Clinical Research EURECCA meeting EUROPA DONNA Training Module on the Role of Advocates in Breast Cancer Research


Month Year I 40

LIST OF TRAVEL AND SUBSISTANCE COSTS:

Travel and subsistence costs incurred during 2013 consisted of speakers’ and participants’ travel, accommodation and meals from our Advocacy Training Course and our Pan-European Conference. 2013 TRAVEL COSTS OF EXTERNAL INVITEES ADVOCACY TRAINING--

LINE 323 OF EAHC BUDGET

Mona Knotek-Reggenbauer, Training Course attendee, Austria

228,96

Natalkija Frank, Training Course attendee, Austria

273,33

Victoria Zabala, Training Course attendee, Belgium

187,48

Doroteja Vukalovic, Training Course attendee, Croatia

325,00

Katarina Vukalovic, Training Course attendee, Croatia

125,00

Jitka Chudackova, Training Course attendee, Czech Republic

432,00

Maie Vali, Training Course attendee, Estonia

230,00

Marina Orlova, Training Course attendee, Estonia

216,00

Catherine Cerisey, Training Course attendee, France

130,00

Anne Keating, Training Course attendee, Ireland

277,58

Maria Gonzalez, Training Course attendee, Ireland

193,88

Daiga Meiersone, Training Course attendee, Latvia

174,75

Sarmite Bilevica, Training Course attendee, Latvia

174,75

Danika Maria Attard, Training Course attendee, Malta

97,00

Mary Rose Zammit, Training Course attendee, Malta

97,00

Patty Ter Haak, Training Course attendee, Netherlands

28,00

Beata Dzik, Training Course attendee, Poland

125,20

Ewa Rusin, Training Course attendee, Poland

125,20

Natalia Fialho Amaral, Training Course attendee, Portugal

292,10

Sonia Isabel Martins Silva, Training Course attendee, Portugal

312,10

Radka Tomsic, Training Course attendees, Slovenia

138,20

Carin Tegefeldt, Training Course attendees, Sweden

506,58

Fatma Tanis, Training Course attendee, Turkey

403,60


Month Year I 41

Ximena Montana, Training Course attendee, UK

275,00

Denise May Flett, Training Course attendee, UK

166,00

Elizabeth Bergsten Nordstrom, Training Course Speaker, Sweden

477,81

Olivia Pagani, Training Course Speaker, Italy -

Bettina Borisch, Training Course Speaker, Switzerland

674,00

Chris de Wolf, Training Course Speaker, Switzerland

249,60

Stella Kyriakides, Training Course Speaker, Cyprus -

Sub-Total Travel Costs of External Invitees Advocacy Training

6.936,12

2013 TRAVEL COSTS OF 11TH PAN EURO CONFERENCE SPEAKERS AND ED ATTENDEES--

LINE 323 OF EAHC BUDGET

Elisabeth Marnier, speaker ED France

287,75

Roswitha Britz, Board member attendee, ED Spain 328,10

Sema Erdem, Board member attendee, ED Turkey

465,60

Gloria Freilich, Victoria Harmer, Mary Buchanan attendees, ED UK

372,90

Francesca Balena, MBC woman, ED Italy

244,00

ED Italy: Elisabetta Marano, Maria Sestini, Corrado Tinterri, attendees

600,00

ED Poland: 12 attendees

235,70

ED Iceland: 2 attendees

1.086,00

Juta Steinerte, attendee ED Latvia 472,29

Margaret Spittle, speaker, ED UK

470,00

Heli Siponen, attendee, ED Finland

701,67

Christiane Goschke, attendee, ED Austria

212,78

Kathryn Bouskill, speaker, ED Austria

148,20

Mona Knotek-Roggenbauer, attendee, ED Austria

152,20

Peter Dubsky, Speaker, Austria

178,00

Natalija Frank, attendee, ED Austria 88,00

Jonna Yde, attendee, ED Austria

230,00


Month Year I 42

Tiiu-Liis Tigane, attendee, ED Estonia

248,22

Ene Tomberg, Board member, ED Estonia

310,00

Zsuzsanna Péter and Judit Vargane Parti, participants ED Hungary

324,00

Elizabeth Bergsten Nordstrom, Board, ED Sweden 334,10

Marianne Lundin, attendee, ED Sweden

376,00

Bozena Sarcevic and Nada Kraljevic, attendees, ED Croatia

600,00

Tanja Spanic, attendee, ED Slovenia

80,00

Marianne Schweiger, attendee, ED Austria

165,00

Gabriele Herzog, MBC bursary, ED Austria

175,28

Maie Egipt, attendee ED Estonia 229,53

Mariette Fischbach, attendee, ED Luxembourg 261,74

Mariette Weber, attendee, ED Luxembourg 301,74

ED France: Fook Seng, Dragon, Leca, Grenet, Lasseron 665,46

Nicole Zernik, ED Board, ED France 333,38

Mila Nenova, attendee, ED Bulgaria 946,18

Tara Byrne, attendee, ED Ireland 250,56

Dymphna Watson, attendee, ED Ireland 306,64

Doris Fenech, attendee, ED Malta 300,00

Sandy Muscat, attendee, ED Malta 300,00

Gertrude Abela, ED Board, ED Malta 415,66

Chantal Goosens, attendee, ED Belgium 395,59

Violet Aroyo, attendee, ED Turkey 300,00

Hulya Sisli, attendee, ED Turkey 300,00

Dr. Dorothy Goddard, speaker, UK 405,00

Darina Kallayova, attendee, ED Slovak Republic 84,71

Isabelle Romieu, speaker IARC, France 364,32


Month Year I 43

Mojca Miklavcic, Board, ED Slovenia 546,50

Elena Markovska and Mirjana Babamova, attendees, ED Macedonia 414,00

Ed Spain: Dolores Fernandez Ahedo & Rosa Blanca Gil Goicoechea & Begonia Garcia Sanchez

800,00

Anna Aristodemou, Young Woman bursary, ED Cyprus 405,00

Katerina Stephanou, MBC bursary, ED Cyprus

430,00

ED Cyprus: Perdiou, Stella Mastora, Kyriakoula Erimoudi, Eleni Kourri

1.200,00

Evi Papadopoulos, Board, ED Cyprus

395,00

ED Netherlands: Ellen Verschuur, Jet van der Meijden, Marga Schrieks, Maureen Ensink

700,00

Taxi transfers Board and speakers

242,10

Sub-Total Travel Costs of External Invitees 11th Pan European Conference 20.178,90

TOTAL TRAVEL COSTS OF EXTERNAL INVITEES 27.115,02

2013 SUBSISTENCE ALLOWANCES EXTERNAL INVITEES FOR ADVOCACY TRAINING SPEAKERS

AND ED ATTENDEES--LINE 324 OF EAHC BUDGET

Advocacy Training Course Coffee breaks November 15

495,00

Advocacy Training CourseCoffee break November 16 morning 396,00

Advocacy Training CourseCoffee break November 16 afternoon 396,00

Advocacy Training CourseCoffee break x November 17

396,00

Advocacy Training CourseLunch#1 November 16

1.320,00

Advocacy Training CourseLunch #2 November 17 1.320,00

Advocacy Training Course Hotel for all attendees and speakers minus outside EU 14.531,00

Advocacy Training CourseDinner #1 at restaurant Meneghina November 15 1.980,00

Advocacy Training CourseDinner # 2 Antica Osteria Milanese November 16 1.740,00

Sub-Total Subsistence of External Invitees Advocacy Training

22.574,00


Month Year I 44

2013 SUBSISTENCE ALLOWANCES EXTERNAL INVITEES FOR 11TH PAN EURO CONFERENCE

SPEAKERS AND ED ATTENDEES--LINE 324 OF EAHC BUDGET

Gloria Freilich, Victoria Harmer, Mary Buchanan attendees, ED UK

600,00

Francesca Balena, MBC woman, ED Italy

200,00

ED Italy: Elisabetta Marano, Maria Sestini, Corrado Tinterri, attendees Italy 600,00

ED Poland: 12 attendees

142,70

Juta Steinerte, attendee ED Latvia

45,58

Olivia Pagani, Speaker ED Switzerland

100,00

Heli Siponen, attendee, ED Finland

300,00

Kathryn Bouskill, speaker, ED Austria

198,00

Mona Knotek-Roggenbauer, attendee, ED Austria

232,02

Natalija Frank, attendee, ED Austria

215,00

Jonna Yde, attendee, ED Austria

230,00

Zsuzsanna Péter and Judit Vargane Parti, participants ED Hungary

200,00

Marianne Lundin, attendee, ED Sweden

249,00

Bozena Sarcevic and Nada Kraljevic, attendees, ED Croatia

600,00

Tanja Spanic, attendee, ED Slovenia

300,00

Marianne Schweiger, attendee, ED Austria

200,00

Gabriele Herzog, MBC bursary, ED Austria

235,00

Mojca Miklavcic, Board, ED Slovenia

546,50

Mojca Sencar and Gabrijela Petric Grabnar, attendees, ED Slovenia

600,00

Maie Egipt, attendee ED Estonia

300,00

Mariette Fischbach, attendee, ED Luxembourg

410,76

Mariette Weber, attendee, ED Luxembourg

414,88

Mila Nenova, attendee, ED Bulgaria

253,82

Tara Byrne, attendee, ED Ireland

200,00

Dymphna Watson, attendee, ED Ireland

201,71


Month Year I 45

Doris Fenech, attendee, ED Malta

300,00

Sandy Muscat, attendee, ED Malta

300,00

Chantal Goosens, attendee, ED Belgium

260,16

Violet Aroyo, attendee, ED Turkey 300,00

Hulya Sisli, attendee, ED Turkey 300,00

Darina Kallayova, attendee, ED Slovak Republic

213,80

Elena Markovska and Mirjana Babamova, attendees, ED Macedonia

431,00

ED Spain: Dolores Fernandez Ahedo & Rosa Blanca Gil Goicoechea & Begonia Garcia Sanchez

400,00

ED Netherlands: Ellen Verschuur, Jet van der Meijden, Marga Schrieks, Maureen Ensink

500,00

MEALS, COFFEE BREAKS:

Dinner Friday 18/10/2013

4.800,00

Dinner Saturday 19/10/2013

5.940,00

Saturday a.m. coffee break

1.190,00

Saturday lunch buffet

3.400,00

Saturday p.m. coffee break

1.700,00

Sunday 20/10/2013 a.m. coffee break

910,00

Sunday buffet lunch

2.600,00

Hotel rooms for Board and speakers

4.800,00

Sub-Total Subsistence of External Invitees 11th Pan European Conference 35.919,93

TOTAL SUBSISTENCE OF EXTERNAL INVITEES 58.493,93

CHANGES TO ORIGINAL PLANNING, INCLUDING PROBLEMS WHICH

OCCURRED AND HOW ED SOLVED THEM:

ED made a few small changes to our 2013 Core Programme as compared to what we had originally written in our proposal to the CHAFEA due to changes . They are as follows:

1. Barbara Klein, Communications Officer, continued her maternity leave into 2013 and returned to work on 1st of May, 2013. In the meantime, the rest of the staff dealth with the staff shortage by dividing up her duties (as we had


Month Year I 46

done from September 1st through December 31, 2012) and we all did a part of Barbara's job in during her absence. Paige Robinson in particular took on many of Barbara’s administrative tasks and thus put in quite a bit more time than originally budgeted for into core work. Susan Knox also put in more time on projects usually overseen by Barbara, as is reflected in the staff costs. Of course, Barbara's actual hours worked were significantly lower than what was originally budgeted.

2. With regard to Deliverable #2, Highlights of EUROPA DONNA's September 2012 Advocacy Leader Conference, it was decided to split the highlights into three separate documents since the subject-matter covered was extremely diverse, and the publications were thought to be more useful as three separate documents than as one. The first document is a summary report on non-profit management as covered at the conference called “Building our Organisations for the Future”, the second is a summary report on "Perspectives on Advocacy for Women with Metastatic Breast Cancer", and this was regarded as an internal document which was only distributed to ED National Representatives and Board members. The second was initially presented and distributed by EUROPA DONNA at the ABC2 (Advanced Breast Cancer 2) conference in Lisbon in November 2013. The final publication is “Understanding Health Technology Assessment and sustainability of health system financing” based on the keynote presentation at the conference. This change was made with permission by ED’s CHAFEA contact, Antoinette Martiat.

3. With regard to Deliverable #7, Electronic News, it was decided to publish four instead of six issues in 2013 (and beyond) since that will fit better with the events we programme and attend throughout the year. This was done with permission by ED’s CHAFEA contact, Antoinette Martiat.

4. We added an un-numbered deliverable that 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 (a very important subject for breast cancer advocacy) as presented in the EU Guidelines. This annex can be easily translated by ED members. (The Short Guide is ED's 32-page booklet summarizing the over 400-page EU Guidelines, and this document is our advocates' primary advocacy tool.) This change was made with permission by ED’s CHAFEA contact, Antoinette Martiat.

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 Again in 2013, a high number of women, 57, took part in EUROPA DONNA’s European Breast Cancer Advocacy Training course and we received feedback from most of them (51). Overall the feedback was excellent, with all but one saying that the training had met their expectations this year and the vast majority saying it was “very useful” – the highest rating. Three said “moderately useful” and 3 did not give a rating in this category. The vast majority of the participants also rated all the individual presentations “very useful”. The presentations which were rated most highly were Psycho-social Aspects of Breast Cancer (Stella Kyriakides), and Treatment of Breast Cancer (Alberto Costa). Forty-nine


Month Year I 47

out of 51 rated Stella’s presentation “very useful” with the rest “moderately useful” and 19 women said it was their highlight of the day. Forty-six rated Alberto’s presentation “very useful” with the rest “moderately useful” and 16 saying it was their highlight of the day. The Epidemiology presentation this year was given by a new speaker, Carlotta Galeone. It was quite well received, with 37 rating it “very useful” and 11 “moderately useful” (2 said “not useful” and one did not rate it). She came from the Istituto Mario Negri, was recommended by Eva Negri, the previous speaker, and Carlo la Vecchia. The Advocacy and Lobbying presentation given by ED’s CEO Susan Knox was substantially re-worked for 2013. It now focused much more on “how to” advocate and lobby and what steps to take, and less on the examples of successful lobbying strategies at the European level. It was received considerably better this year as a result. 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 “wonderful to share with colleagues from other countries”, “I learned a lot”, “very interesting”. Suggestions were to include more on economics and HTA, more on psychosocial aspects (which attendees always find very interesting), more examples of advocacy and lobbying successes, more on diet and nutrition and also IBC. A few also wanted more time for the workshops and for networking.

The Communications Skills Training module was received extremely well again this year. A total of 83% of participants gave it 9 or 10 (on a scale of 10, ten being the highest), overall, with the rest giving it 8 . The participants always seem to find this part of the course very valuable and inspiring and really enjoy the interactivity. A few asked for even more time for this part of the course and one or two asked that it be at the beginning so they could get to know each other more quickly. A few commented that it would be useful to have video feedback or filming of their short presentations in the group. Others commented that they would like even more on lobbying. A few people also commented that there were those who did not speak English so well, and that their colleagues translating for them was disturbing.. (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 Evaluation Findings 11th Pan-European Conference At the 2013 EUROPA DONNA Pan-European Conference, ED asked participants to

complete a survey whose purpose was to help plan future conferences. Some 210

people were in attendance (excluding speakers, ED staff, volunteers and observers)

from 36 countries. EUROPA DONNA received 75 completed evaluation forms for the

event, which represents a response rate of 35.7%.

For each conference session respondents were asked to rate quality and usefulness.

When appropriate, additional questions were asked to help clarify how the Head Office

can better serve our member fora and breast cancer advocates in general with regard

to its Pan European and other conferences. People were also asked whether they

achieved what they had hoped to get out of the conference and 77% responded in the

affirmative, 21% responded “somewhat” and only one respondent responded in the

negative).


Month Year I 48

Rating of the conference sessions was conducted on a four point scale, with “very

high” worth 4 points being the highest or the best rating and “very low” being the

worst worth 1 point (there was also a “did not attend” category). All presentation

sessions scored highly, with an average rating overall quality of 3.416; the lowest-

rated session scored a very respectable 3.135 and the highest scored a 3.684.

Likewise, average rating overall usefulness of presentations was 3.417; the lowest-

rated session scored a very respectable 3.057 and the highest scored a 3.608.

Highest rated in order were “Pathology: its growing importance and what patients

should know”, 2nd ; “Advances in BC treatment” and 3rd “Personalized medicine and

current research”.

Workshops also fared well, being judged in quality ranging from 3.6 for the

Survivorship session to 3.0 for the MBC session and in usefulness from 3.466 for the

Young Women session to 3.181 for MBC.

Feedback in terms of comments written about the conference was also generally

extremely positive and suggestions for future topics will be helpful to plan future

events. The survey also includes a section on the conference organisation, social

events, facilities and conference food and refreshments. In all of these categories,

too, the vast majority scored each either having as “very high” or “somewhat high”

satisfaction or “very good” or “good” quality.

(See ATTACHMENT 5 for full evaluation report Pan European Conference.)

An additional follow-up evaluation will be sent to all ED conference participants in the coming month to determine if and how their advocacy efforts have changed as a result of the conference. Summary of Assessment of ED Publications Survey

ED regularly surveys its members and stakeholders about the impact of the Information Programme using quantifiable indicators, their information needs and if those are met. Because ED’s publications do not change dramatically from one year to the next, we relied on data from our November 2012 survey sent to the National Representatives of its 46 ED member countries. The purpose of the survey was to understand how useful ED’s publications were in order to determine how we should move forward with them in 2013 and beyond. For each publication the National Representative was asked to rate usefulness, quantity they would like to receive in the future, and if they would like a print-ready version to enable translations (which is a possibility the Head Office is now pursuing for various publications). When appropriate, additional questions were asked to help clarify how the Head Office can better serve our member fora with regard to its publications. A total of 27 EUROPA DONNA fora responded to the survey, which represents a response rate of 58.6%, not taking into account a few countries that are currently inactive such as Germany. Attachment 3 is a review of the publications. Rating was conducted on a scale of 1-10, with 10 being the highest or the best rating in terms of usefulness of these publications in providing fora with valuable information. All publications scored very highly, with an average rating overall of 8.852; the lowest-rated publication scored a very respectable 8.277 and the highest scored a 9.346.


Month Year I 49

Highest rated in order were 1st Short Guides to the European Guidelines (9.346), 2nd Breast Health Day/Guide to Breast Health (9.23); and 3rd ED Annual Newsletter (9.192). Feedback in terms of comments written in by the National Representatives were also extremely positive. For most of the publications, a majority of the responding countries said it would be useful to translate into their own languages. (See ATTACHMENT 6 for full evaluation report Publications Survey.)

Regarding ED translations of the Short Guide to the EU Guidelines done in 2013 (into Croatian, and Czech), users in the countries will be surveyed to evaluate usefulness and impact after the translations have been in circulation for a year. This gives users enough time to understand the impact the Guide is having. However, ED translations of the Short Guide to the EU Guidelines completed in 2012 (into Portuguese, Latvian and Norwegian), were surveyed. When asked, “On a scale of 1 to 10, with ten being the highest, how useful have the Short Guides been

to your advocacy efforts? Please explain.” ED Latvia responded, “ 10-very useful”. ED Portugual responded: “ 10 – they made

the Guidelines accessible to a wide number of Portuguese individuals and decision

makers ; they also increased our credibility when we talked about these issues – it

wasn’t something we had made up – it is actually the EUROPEAN recommendation ! “

ED Norway instead responded: “not very important.”

In response to the question, “Have you seen any positive changes (such as in government policy or in public knowledge of women’s rights regarding breast

health) in your country since you have started using the Short Guide?” ED Latvia responded:” Yes, in Latvia implemented organized breast cancer screening program.” “ ED Portugal: “It is still early but I think slowly women are starting to realize the importance of specialist breast units.” ED Norway: “no.” (See ATTACHMENT 7 for full evaluation report.)

Evaluation of www.europadonna.org website in 2013: Because we changed our website provider several months into 2013 we were only able to compile statistics on the new site from October through December. The following are the website statistics for the year that we were able to pull together (compiled through AW Stats in 2013 and through Google Analytics in 2012). From 1 October through 31 December 2013:

• The site received 6,988 visits in 4 months (7,682 in the 12 months of 2012) • 4,348 unique visitors entered the site in 4 months (5,227 in the 12 months of

2012) • The site received 22,454 page-views in 4 months (10,515 in 2012)

Considering that in 2013 we were only able to gather statistics for 4 months and we are comparing that to the previous 12 months of 2012, the statistics from the improved website are relatively much higher. Further, 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 2013 Website:


Month Year I 50

According to statistics compiled by Cohn&Wolfe, the web provider, the BHD website in 2012 received:

• 3,154 visits from 102 countries in 2013 (compared to 4,100 visits from 97 countries in 2012)

• 8,646 page views in 2013 (13,346 page views in 2012)

Although the number of BHD website visits and page views decreased in 2013, we instead reached record numbers via social networking sites such as Facebook, Twitter and YouTube. This year ED’s global Twitter reach was 1,334,158, almost 1 million greater than in 2012. Page views of Facebook more than doubled. With the message “Make Good Choices 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 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 2013 with regard to social media:

TWITTER 1,334,158 global Twitter reach (total Twitter reach in 2012 was

336,302)

FACEBOOK 2,036 fans; 189,189 views of ED posts (in 2012, 70,778 views of

posts)

YOUTUBE 5,636 global channel views (no statistics on this in 2012)

4,027 overall video views (no statistics on this in 2012)

3,430 people viewed the BHD video on YouTube (3,387 views in

2012)

Overall, ED’s presence on the Web was a success in 2013, widely spreading ED messages on breast cancer and breast health General Evaluation of ED’s Use of Social Networking Sites in 2013: 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 2013 CORE ACTIVITIES ED put together a team of External Evaluators for the Work Programme 2013; this team comprised three of our past Board members (Ellen Vershuur, Netherlands (Lawyer); Bettina Borisch (Physician, Pathologist); Dierdre O’Connell, Ireland (Chair, ED Ireland)) who are all breast cancer experts with experience in running large non-profit organisations. This team was complemented by one outside consultant, Jo Lucas. She has significant experience of evaluating the work of non-profits (including


Month Year I 51

health-related, advocacy networks) funded by the European Union and also running non-profits. Ms. Lucas performed the following tasks: 1. CONDUCT FOCUS GROUPS At the ED Pan-European Conference in October 2013, she held two focus groups, one on Saturday, 19 October one on Sunday 20 October . Both were one hour sessions; we selected ED 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 PAN EUROPEAN CONFERENCE

Jo Lucas observed the entire Pan European Conference on October 19-20 as it is a part of the 2013 Core Programme This was supplemented by ad hoc informal individual interviews Jo conducted at the ED Pan European Conference and discussions with the women there. 3. OBSERVE GENERAL ASSEMBLY Jo Lucas observed the General Assembly held on Sunday, October 20th as it was a part of the 2013 Core Programme. 4. CONDUCT FOUR SURVEYS Conducted surveys in late-November/December on the following topics:

• ED websites www.europadonna.org and www.breasthealthday.org: ED National Representatives

• ED European presence: 2 ED staff members involved and ED Board • Forum Support—those directly involved: 2 ED staff members involved and ED

Board • Forum Support—those indirectly involved: ED Board members not directly

participating in support 5. REVIEW INTERNAL EVALUATIONS FROM 2013 CORE PROGRAMME Reviewed internal evaluation results and core programme-related results from Strategic Review surveys conducted in 2013 (December 2013/early January 2014). 6. 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 2012. 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 three ED past Board leaders (Bettina Borisch, Ellen Vershuur. Deirdre O’Connell) 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 11th Pan-European Conference evaluation results (internal evaluation) and gave input on results obtained in January/February 2014. Summary of External Evaluator Jo Lucas’s ED Core Evaluation 2013:

In her executive summary statement of her evaluation, Jo Lucas writes: “The small

and dedicated staff team of Europa Donna continue to create a high impact with a cost


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effective programme. The work programme for 2013 outlined in the EAHC proposal

was made up of a range of activities all designed to promote and support Europa

Donna’s (ED’s) core objectives. These included

• Advocacy Training Course

• Highlights of the advocacy leader conference

• Pan European Conference

• ED publications and websites

• Attendance of meetings with other organisations in the field

• Forum Support project

• Internal activities like Board meetings, General Assembly and administration

and management

The expected outcomes of this programme were that:

1. ED Fora are armed with accurate up-to-date information and proven strategies

2. Women are directly educated about the importance of breast cancer screening,

early detection, breast cancer issues and services, and breast health.

The review of the work programme and the data collected for this evaluation show

that the proposed activities have all taken place, the outputs have been produced, and

always to a high standard. In addition to the identified outputs ED also published a

leaflet on Metastatic breast cancer as an annex to the Short Guideline. The feedback

from the participants in the events has been positive and the atmosphere is

empowering. The publications, websites and training events all contributed towards

the achievement of the expected outcomes of disseminating information. The ED

team are careful to ensure that all information made available by ED is accurate and

well researched. They are careful not to promote myths about or aspirations for new

treatments or research.

Thus all the activities are designed to work towards the objectives stated. There is

little doubt that ED functions to add value through sharing health information,

facilitating knowledge and experience exchange, and improving access to services.

The women who participate in ED nationally and internationally feel empowered and

inspired by this interaction and so are better able to contribute to their Fora more

effectively and this reduces the social exclusion that is so often experienced by people

diagnosed with life threatening illnesses.

It is clear from this evaluation that the ED team and Board continue to retain a clear

focus on the aims and purpose of the organisation and ensure that the work

programme is designed to support those objectives. The implementation of the

programme illustrates this clarity of purpose.

The risks identified in the proposal were mitigated by a careful review of programmes

by the staff team and Board. The staff team all contributed significantly to the

implementation of the programme and continue to support each other, the Chief

Executive, the Board and the National Fora.

The more detailed evaluation of some of the activities included in the programme this

year is outlined below. The evaluation of the Pan European conference is included in


Month Year I 53

the report attached. This was a very successful event featuring a wide range of

speakers and attracting an audience beyond ED members. The General Assembly

which followed this event showed how involved many of the members are and the

range of activities that ED head office and the National Fora are able to undertake.

The presentation of the strategic review and the presentations from various Fora of

their activities served to make the meeting both very informative and inspirational.

Following the discussion at the Pan European conference and the General Assembly it

would appear that ED’s strategy of taking a more holistic approach to the inclusion of

survivorship in the range of activities is an important addition to the programme for

the coming years. The full range of information dissemination vehicles, the

newsletter, events, mailings publications, continue to be widely appreciated and well

designed.

The team of staff and Board members continued to participate in external meetings

which were carefully selected to be supportive of ED’s objectives. An outcome of this

investment of time was that ED’s patient advocacy message was integrated into

research and other developments and that ED was able to ensure that the information

they make available is up-to-date. Through this and other activities the ED team also

manage to ensure that the work of ED is coordinated effectively with that of other

agencies like WHO IARC, the ECN, EORTC, EBCN and the JRC. ED is represented on

the patient advocacy committee for the ABC2 conference and in the ESO Advanced

Breast Cancer Task Force.”

Her assessment of ED’s 2013 Core Programme continued to be extremely positive in all of her documentation. (See ATTACHMENT 8 for Jo Lucas’s full Core Programme evaluation report 2012.)

Summary of Past Board Leaders’ Input on Results Obtained in ED Core

Evaluation 2013:

Past Board Panel members were asked to read the Advocacy Training Course evaluation results (internal evaluation), the 11th Pan-European Conference 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 2013 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: 3 “The Pan-European Conference evaluation results show that ED in 2013: 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: 3


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“The external evaluation report draft results show that ED Core Programming in 2013: 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: 2 “Overall – achievement of general ED objectives in 2013” Strongly Agree: 3 “Overall – achievement of Core Programme objectives in 2013” Strongly Agree: 3 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 2013?” Ratings given were: 9, 9, 9 2. “Based on the evaluations you have read, how do you judge the quality of ED Pan-European Conference in 2013?” Ratings given were: 9, 8, 8 3. “Based on the evaluations you have read, how do you judge the quality of the ED Core Programme in 2013?” Ratings given were: 9, 8, 7 4. “Based on the evaluations you have read, how well did the ED Core Programme in 2013 match the users’ needs?” Ratings given were: 9, 8, 7

Finally, they were asked to add any additional comments they wished to make about the EUROPA DONNA’s 2013 Core Programme and evaluations performed. ED received two comments: “2013 Pan European: While it is disappointing that only 75 evaluation forms were returned, I was there and I want to make the point that every effort was made to get participants to hand in those forms!” “There is the question of coverage and reaching out that is difficult to measure for all Europan Fora. We do not have clear outcome measures other than asking participants of our events.”

Dissemination

- Please provide a list of all published material and the website address, indicate the target audience and the main message conveyed

Material published by EUROPA DONNA – The European Breast Cancer

Coalition in 2013:

1. Breast Health Day News

2. Annual Report and Financial Statements

3. 2013 ED Brochure

4. ED Newsletter

5. Highlights of Advocacy Leader Conference: “Building our Organisations for the Future”; “Understanding Health Technology Assessment and sustainability of health system financing”; “Perspectives on Advocacy for Women with Metastatic Breast Cancer”

6.Electronic News (4 editions)


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7.Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis, Fourth edition: translation into Croatian; translation into Czech; reprints in English

8.Metastatic Breast Cancer Annex to the Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis, Fourth edition

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

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 and Highlights of ED’s Advocacy Leader Conference 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 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. 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.

Participation in EU actions (if applicable)

- Please provide your role/contribution to EU actions (i.e. projects)

Meeting with the European Commission’s Joint Research Centre on the

accreditation of breast services

In February 2013 ED’s CEO, Susan Knox, and Head of Policy/Public Affairs, Karen Benn, attended a meeting with the Joint Research Centre (JRC), the in-house science service arm of the European Commission, which provides science advice to EU policy. Susan Knox led a workshop regarding the patient perspective at this meeting. As requested in EU legislation (Council conclusions on reducing the burden of cancer 10-06-2008), JRC plans to implement a voluntary accreditation scheme 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. The development of the scheme will also involve producing a 5th edition to the European


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Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis. We provided the patient’s perspective at the meeting. European Partnership for Action Against Cancer (EPAAC)

We are a collaborating partner in two of the European Commission’s EPAAC Work Packages, WP5 Prevention and WP7 Healthcare. In November 2013, our Head of Policy/Public Affairs, Karen Benn represented us at the final EPAAC Open Forum. AURORA Project Collaboration

EUROPA DONNA was asked by the European Commission’s DG SANCO to be an adviser to the AURORA Cervical Screening Project, which is an EU-funded cervical screening project working with hard-to-reach populations in countries where screening is not yet fully rolled out. Our Head of Policy/Public Affairs, Karen Benn, represents ED on this Advisory Board. She participated by phone in a Budapest Advisory Board meeting in early June 2013. ED’s participation in AURORA was completed in 2013. PICTURE Project: The Patient’s Perspective on Predicting Post-surgical

Aesthetics

We represented the patient’s perspective on Advisory Board of the PICTURE (Patient Information Combined for the Assessment of Specific Surgical Outcomes in Breast Cancer) Project, a new FP7 research project which has been approved by the European Commission. The PICTURE collaboration, involving a number of academic institutions from various countries, plans to develop a prototype of a digital tool that could predict how an individual patient’s breast will look post-surgery. In June, our Executive Board met with the technical advisor of the project to provide input on the patient’s perspective.


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Further remarks - Please state further remarks that you find noteworthy

CONCLUSION

Progress was made on numerous key projects for breast cancer advocacy Europe during 2013. The Joint Research Centre has created a team to develop the accreditation and certification program for breast services following many ED advocacy initiatives promoting this for the last few years. ED participated in an introductory meeting in June 2012 and continues to contribute the patient perspective on this throughout the various stages of the project. Our 2013 core program has been supported by a grant from the European Union in the framework of the Health Programme, thus enabling us to continue to provide education, information and support programs to our 46 European member country groups. Our Pan European Conference and Advocacy Training Course in 2013 were essential to ensuring that our advocates gain the knowledge and updated information to carry out their advocacy work nationally. Advocacy involvement in the Health Technology Assessment process will be important in the future and in 2013 we published a document for our groups concerning this important aspect of health care provision in many of our member countries. Moreover, we provided training to ED Board members on the role of advocates in breast cancer research as an important first step to involving ourselves more in this critically important aspect of the fight against breast cancer. Along these lines, we have already begun expanding our relationship and collaboration with BIG Breast International Group to a number of new research projects, again to ensure that the patient advocacy point of view is expressed and considered in relation to key projects for the future. In addition, we continued to pursue and promote improving advocacy for women with metastatic breast cancer through two publications in 2013, Perspectives on Advocacy for Women with Metastatic Breast Cancer and the MBC Annex we developed to the Short Guide to the European Guidelines. And to this end we collaborated with the European School of Oncology to provide the European advocacy contribution to the ABC2 conference in 2013. Our Breast Health Day prevention program which includes the BHD website continues to capture the attention of thousands of women across the world and to now be a focus for many of our national Europa Donna groups. Finally, in 2013 ED’s new five year Strategic Plan 2014-2018 was passed by our Board and General Assembly which will both guide our next steps and keep ED’s focus sharp and clear.

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 2013. 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.


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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

final report operating grant 2013 final 27.02.2014 · 2015-01-27 · advocacy leader conference...

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