ECPC – Balancing the needs of Individuals
Balancing needs of the individual with broad advocacy
For larger, international umbrella patient groups, maintaining ties with, and supporting individual patients, can be challenging. Nonetheless, one such organisation has made a point of recognising the importance of placing the patient at the heart of what they do, as evidenced by the recent restructuring of its website. At launch, the European Cancer Patient Coalition made clear its intent to hit a balance between policy and patient support: “We completely changed our approach. When you search through the website now, you will see that a cancer patient is really the centre of our focus. We rewrote the information of all activities we were, or are involved in, to explain why they are relevant for the cancer patient community. Now more than ever, ECPC’s role in projects is visible, how we contributed to European policy and research, and what we have achieved.” – Antonella Cardone, ECPC Director.
With more than 450 member groups across Europe and representing patients who are experiencing a broad diversity of cancers including rare cancers, the task of offering practical support for patients was considerable. Under the toolbox tab in the website, ECPC offers a range of cancer support resources, including a series of Cancer Patient Guides produced with the European Society for Medical Oncology (ESMO). Some materials are available in English and the biggest European languages – others are being translated into other languages like Czech, Romanian and Croatian.
ECPC shows there is huge scope for umbrella organisations to close gaps in patient support while preventing duplication or dilution of resources and ‘reinventing wheels’ at the local level. The relaunched site aims to hit the balance between European scope and impact on individual patients. According to the organisation, “The ECPC website does not just display what is going on at the European level, it also provides members with practical tools such as a HTA (Health Technology Assessment) e-learning module, high-quality educational material and translations of this material on crucial topics like nutrition, survivorship and self-care.”
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