ECPC marked the European Week Against Cancer by organising a two-day conference together with the  European Commission’s People 2 People programme. Participants of a P2P study tour, including cancer patients advocates and representatives of the oncology societies from the Western Balkans region, Turkey and Iceland, joined the conference entitled “Patients’ Voices in the European Week Against Cancer” on May 26-27.

ECPC President Tom Hudson greeted delegates and welcomed them to the first day of the event in the Committee of Regions. He urged the guests to speak out, emphasising that this event was centred on exchange, on a dialogue between CSOs – person to person and patient to patient.

The first session, called “Cancer Patient to Cancer Patient,” invited cancer patient and onco-urologist Prof. Louis Denis, Secretary General of Europa Uomo, and Andrzej Zakrzewski, Director of the Regional Office of the Polish National Health Fund. They spoke about the importance of building good relationships between patients, doctors and healthcare providers to improve communication and collaboration. Prof. Denis reminded delegates that “this disease does not stop at borders, nor do calamities and problems faced with cancer morbidity or mortality. We have a common fight across our countries.”

Focusing on patients supporting cancer partnerships, the second session involved patient advocates from Eastern Europe and the Balkans region. Jacek Gugulski from the Polish Cancer Patient Coalition, Salih Yuce from the Turkish Youth Accumulation Association, and Viorica Cursaru from Myeloma Euronet Romania, presented the work of their organisations, addressing some of their challenges and highlighting the value of cooperation with a broad range of stakeholders, including politicians and pharmaceutical organisations.

During the third session, Prof. Bettina Borisch, President of Europa Donna, spoke about the structure and functions of this pan-European organisation and the valuable contribution of volunteers. She particularly emphasised the importance of working together to identity and address barriers to improvements to care, and condemned a culture of paternalism which functioned between cultures and nations as well as between doctors and patients. Kathi Apostolidis, a patients’ rights advocate and breast cancer patient from Greece, reminded the delegates assembled of the key points of patient advocacy and networking with parallel organisations to generate movements. She drew attention to the ECPC advocacy toolbox as a valuable starting point.

ECPC Board Member Jana Pelouchova addressed “wishes and realities” in the world of a European CSO. Her organisation in the Czech Republic, CML Diagnoza, faces many challenges representative of those faced by CSOs across the EU, including the importance of understanding medical science and presenting reliable statistics to politicians. The involvement of experts in non-voting advisory boards or as participants in education events is invaluable.

The issue of involving young people in cancer strategies was addressed repeatedly during the event. All agreed that young people, the future of cancer strategy and future citizens, need to be involved and engaged on cancer issues. As Tom Hudson said, “Youth is our future.” He and ECPC’s youngest Board Member, Sarunas Narbutas, addressed this issue thoroughly during the fourth session, welcoming “a new era of cancer dialogue.” Sarunas’s story illustrated the fact that young people are as capable as older ones of altering their fate, and he agreed with delegates who raised concerns about doctors who speak only with parents of young patients, without building relationships with young patients themselves.

The first day ended on a very positive note, with all present feeling that much ground had been covered and looking forwards to the second day.

The second day was held around the corner from the Committee of Regions in the European Economic and Social Committee, which offers CSOs a role in the European institutional system. Aurelien Julliard, from the Visits and Seminars Unit of the EESC, introduced the institution and explained its role. He supported the development of socio-economic councils at national and local level in all regions. He went on to outline the role of Joint Consultative Committees, which are established with candidate countries. EESC member, and ECPC Board member, Ingrid Kössler, spoke about the importance of national cancer control plans and encouraged all CSOs to be involved in their development. Outlining the role of cancer CSOs in the EESC, she also presented a number of opinions developed and adopted by the EESC on relevant topics.

The final session invited social media expert Denise Silber to take delegates through the process of defining and executing a social media strategy, including addressing any concerns or inhibitions which might hold people back. She suggested a number of innovative methods for increasing impact at low cost, including effective use of volunteers. Laila Petursdottir from the Icelandic Cancer Society demonstrated the Moustache March campaign, which has achieved astonishing success in raising both awareness of male cancers and funds for screening programmes. It has achieved this through effective use of internet and website presence, amongst others.

Throughout this event, delegates enjoyed an exchange of comments, thoughts and experiences, allowing them to share best practice and take home ideas for future initiatives as well as a network of contacts. ECPC has made many friends over these two days, and we look forward to collaborating on projects together in the future.

Download the press release in PDF