Training metastatic breast cancer advocates in Europe

Context

EUROPA DONNA – The European Breast Cancer Coalition is working to improve breast cancer services and to raise awareness of the needs of women with metastatic breast cancer (MBC) across Europe. Building on their educational programmes for breast cancer advocates and using the wide Europa Donna network, in 2018, the organisation decided to launch an MBC advocacy training course for advocates through a SPARC MBC Challenge grant.

Europa Donna is an independent non-profit organisation whose members are affiliated groups from 47 European countries. The organisation’s mission is to raise awareness about breast cancer and to mobilise the support of women in Europe for improved breast cancer education, appropriate screening, optimal treatment and increased funding for research. Europa Donna represents the interests of women in Europe on breast cancer to local and national authorities as well as to institutions of the European Union. The Head Office is located in Milan, Italy.

Project description

In 2017, EUROPA DONNA – The European Breast Cancer Coalition was awarded a SPARC MBC Challenge grant to develop and implement an intensive MBC advocacy training course to better support MBC advocates in Europe promote the rights of MBC patients.

The training course included content on communication skills, as well as scientific and advocacy lectures, and was 2.5 days in length. The training on communication skills was delivered by three communication experts and included practical presentation skills and techniques on assertiveness. Participants were coached individually as to how to handle various situations relevant to MBC advocacy. Scientific lectures included topics such as the biology, diagnosis and treatment of MBC; epidemiology and risk factors of the disease; clinical trials; and EU guidelines and specialist breast unit guidelines on MBC. During the training, each participant also had the opportunity shared their personal experiences regarding MBC and receive feedback on the way they present their story for advocacy purposes.

“Metastatic breast cancer advocacy means actively influencing policy, legislation and attitudes for and with women with MBC to ensure they obtain the services to which they are entitled.  Our Coalition ia working constantly to improve services for women with MBC across all European countries.  We feel that there is a need to bring advocates together from around Europe to learn how to advance the five key areas where advocacy for MBC is needed today: awareness, information, access to best treatment, support, registries and date collection.”
-Susan Knox, CEO/Executive Director, EUROPA DONNA – The European Breast Cancer Coalition

One advocate from each of the 47 Europa Donna member countries was invited to attend the first MBC advocacy training course that took place in September 2018 in Milan.

Impact

From 28-30th September 2018, 37 participants from Europe attended the two-day workshop in Milan on advocacy for MBC. The participants included individuals who had been recently diagnosed, with others who had been living with MBC for many years.

Individuals shared advocacy strategies from their countries, such as establishing 13th October as MBC day within their national context, an MBC postage stamp, online petitions, crowdfunding for projects and meetings with high-level politicians. Specific session objectives included disseminating up-to-date informational materials, sharing the latest news on breast cancer treatment and research, discussing the rights of breast cancer patients at work, establishing breast cancer registries, presenting the Europa Donna advocacy toolkit as well as mentoring participants on communication skills. The course ended with a full day focused on communication skills, including workshops to educate advocates on effective techniques (such as sharing their personal stories) to raise awareness about MBC. Some of the advocates shared their personal experiences through videos filmed for the MBC section of the Europa Donna website.

MBC continues to be an advocacy priority for Europa Donna which continues its involvement in multiple initiatives in Europe to address the unique needs of this group of women. By training women with MBC, more people who have experienced the issues first-hand will be prepared to advocate on behalf of all those living with MBC. Europa Donna organised an MBC Advocacy Conference in 2019 and is planning another to take place in 2020.

More

• Organisation’s website: Europa Donna’s website
• MBC dedicated website: MBC Europa Donna’s website
• Advocacy toolkit: MBC Europa Donna’s campaign materials
• Videos: Advocates speak out
• Report: Report on the MBC advocacy training (report on the SPARC project)
• Report: 2nd Metastatic Breast Cancer Advocacy Conference

(Information from the project description and context is compiled from the SPARC reports)