The ECPC community: connecting policies to everyday life

Today’s guest blog comes from Mihaela Militaru, Director of the European Cancer Patient Coalition. Mihaela has been in the role since August 2013.

In a Europe of increasing health inequalities, the European Cancer Patient Coalition (ECPC), the umbrella of cancer patient organisations (bringing together 364 cancer patients organisations), plays an important role in health and cancer care policy advocacy by incorporating real life experiences into its work. As cancer patient advocates, we bring our own personal experiences to the cancer and health-care policy table.

ECPC_BookOur General Assembly, held in June in Brussels, gave us the opportunity to take a look back at the past year. In my opinion, our most important achievement has been the creation of a “community” for many cancer survivors and patient advocates. Our community has enabled many of us at ECPC to engage the power of our emotions in constructive and meaningful projects. When Ivna Maluly contacted us to share her breast cancer journey, we discovered that she had written a story, to enable her  to answer the questions of her young son about what was wrong with her. This story has evolved into an inviting colourful book for children ''What's happening to my mummy?'', which was produced by ECPC within 6 months. This is an example of a project that resulted from listening to what our community has in its heart.

At ECPC’s 2015 General Assembly, we could also see some of the projects that resulted from the engagement of our community, such as the draft policy paper on A Europe of Disparities.  To gather content for the document, ECPC asked cancer patients across Europe to provide their input and experience, through a survey. The results of the survey provided our group of experts with first-hand, in-depth experience of cancer care inequalities, directly from individual cancer patients and national cancer patients associations. We will share the document with policymakers in October 2015. Another major project of ECPC, developed with the help of our members, is the educational project on the importance of nutrition for cancer patients. We had an impressive number of responses to the ECPC survey on nutrition -  680 -  and the preliminary results were showcased in a separate panel during the AGM.

Such projects are possible because we are working to build long-lasting relationships based on mutual trust with our community.

Our president, to whom I am thankful for his continued support, said very clearly at our last AGM that trust and credibility go hand-in-hand. ECPC has worked hard during the last two years to strengthen its credibility, built on trust that translates into the activities and projects in which ECPC is involved.

The European Cancer Patient Coalition participates in most of the EU cancer policy-led initiatives.  We cooperate in the European Commission’s Expert Group on Cancer Control that was created in 2014 to assist the European Commission on cancer-related policies and we are also involved in the recently established European Initiative on Breast Cancer.

The European Joint Action on Cancer Control – CanCon (from 2013-2016), coordinated by DG SANTE and joined by EU Member States is another EU initiative to which ECPC actively contributes (we are involved in several work packages of the joint action). Our organisation is extremely concerned about the increasing health inequalities and this project can help to harmonise the way we fight cancer in Europe.

Thanks to our network of health and cancer stakeholders, we have expanded the scope of our work. ECPC has built capacities to develop content and create policy tools to facilitate dialogue and suggest ideas.  We were the first cancer patient group to initiate the discussion on immuno-oncology in the European Parliament back in 2013. This is a great and exciting field that requires further education, both for patients and for decision-makers. We were proud to present during the AGM the structure of the on-line educational platform on immuno-oncology that we are currently preparing, to be launched in November.

Last but not least, our ECPC community has been joined in the last two years by more than 20 new members. I look forward to continuing to develop and enlarge this great community of health advocates, in order to bring real life experiences into health and cancer policies.

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