The battle against cancer is wide-ranging and must include:
Such quality of life issues include the need to enhance supportive and palliative care (psycho-social and drug-related) for patients, as well as the combat of lingering stigma and fear around cancer.
To these ends and more, our Network on Survivorship and Quality of Life, along with its co-chairs Csaba Dégi and Nevenka Krčevski Škvarč, are convening, collaborating and coordinating.
Survivorship and Quality of Life are admirably central to EU Health Commissioner Stella Kyriakides’s vision for Europe’s Beating Cancer Plan and have been made a dedicated pillar of Europe’s Beating Cancer Plan launched by the European Commission in February 2021. Therefore, our Survivorship and Quality of Life Network, bringing together a wide range of experts and stakeholders, from our Member Societies, Patient Advisory Committee and Community 365, as well as external partners, intends to populate this vital EU agenda by promoting opportunities for pan European improvement in the way health systems and society takes care of the survivorship and quality of life challenges faced by cancer patients, their carers, partners and families.
The Network builds on excellent projects and initiatives on Survivorship and Quality of Life already advanced by participants in the Network, and highlights important areas of established consensus for progress.
This includes, for example, the united view of the cancer community to establish a ‘right to be forgotten’ for cancer survivors when seeking to access financial services. This has proven to be a crucial legislative tool for tackling discrimination. It is already well-established in France Belgium, Luxemburg, the Netherlands, and most recently in Portugal, and is recommended for codification in all European countries. See the 2018 European Cancer Summit resolution on Survivorship (Financial Discrimination) for further information.
Our Co-Chairs have convened meetings of participating Member Societies, patient groups, Community 365 and other invited stakeholders, to set the agenda for the coming years. Two important workstreams have been identified for the Network’s initial focus to address cancer patients and survivors:
Cancer survivors frequently report difficulties communicating with oncologists, GPs and nurses.
SmartCARE is developing a ‘Cancer Survivor Smart Card’. This digital tool decreases the communication gap between survivors and health and social-care providers. These providers promote citizen empowerment through patient-centered care and ultimately enhance the quality of life and of cancer survivors. ECO is coordinating this EU Project under the EU4Health Programme 2021-2027, focused on sustainability and user needs.
Read more here.
On the occasion of its dedicated session at the European Cancer Summit 2020, the Network published a landmark report outlining its key recommendations: “Free From Cancer: Achieving Quality of Life for All Cancer Patients and Survivors”. Produced via intense consultation with the European Cancer Organisation’s community, especially with the participants in the Survivorship and Quality of Life Network, the report highlights 7 priorities to help more cancer patients and survivors achieve a life truly free from cancer and its often under-appreciated impacts:
On 11 January 2021, the European Parliament’s Special Committee on Beating Cancer (BECA) held an expert hearing devoted to the empowerment of patients and their caregivers. Speaking at the hearing, Matti Aapro, Past President of the European Cancer Organisation, highlighted the many opportunities for EU policies to better address the survivorship and quality of life needs of cancer patients.
Drawing attention of the Committee on the Survivorship and Quality of Life Network’s report “Free From Cancer: Achieving Quality of Life for All Cancer Patients and Survivors”, he called the European Parliament and the European Commission to ensure that Europe’s Beating Cancer Plan covers all bases of cancer survivorship and quality of life, from cancer distress to cancer co-morbidities, from return to work to freedom from financial discrimination, from sex lives to pain management.
Building upon its consensus positioning and initial representations, in 2021 the Survivorship and Quality of Life Network has widened and accelerated its activities to promote and advocate for the key asks enclosed in its ‘Free From Cancer’ consensus advocacy document, towards advancing cancer survivors’ quality of life through available opportunities. This has included:
In addition, the Survivorship and Quality of Life Network is presently engaged in providing advice to the European Commission on the creation of a ‘Cancer Survivor Smart-Card’, as outlined in Europe’s Beating Cancer Plan. Further updates will be shared in due course.
A strong alignment of the Survivorship and Quality of Life Network with the European Code of Cancer Practice has also been recognised. The Code co-produced by a team of cancer patients, patient advocates and cancer professionals, and launched in October 2020, sets out a series of 10 key overarching rights, and in particular signposts what patients should expect from their health system, in order for them to achieve the best possible outcomes. Four of the Code’s rights pertain more specifically to cancer survivorship and quality of life:
Find out more about the Code here.