Survivorship and Quality of Life Network

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European Cancer Summit 2023 Session: Cancer Survivors Matter - Championing the European Cancer Survivorship Day and Advancing the Right to Be Forgotten
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Watch the session recording here and read the full European Cancer Summit 2023 Report to discover the rich and diverse discussions of this session.

 

Our Efforts Include:
smartCARE: Improving Cancer Survivors’ Quality of Life
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The Survivorship and Quality of Life Network guides several of ECO’s EU-funded projects to ensure they address actual needs of both cancer patients and survivors.

An important such project, smartCARE, is developing a ‘Cancer Survivor Smart Card’. This digital tool is designed to reduce the communication gap that often exists between survivors and providers of health and social care, thereby empowering them and enhancing their quality of life. ECO is coordinating this EU Project under the EU4Health Programme 2021-2027, focused on sustainability and user needs.

Read more here.

The Right to Be Forgotten

To ensure that cancer survivors do not face financial discrimination as they move on with their lives, we are working to ensure the European Union and Member States fully implement the 'right to be forgotten' laws across the EU.

 Françoise Meunier at 2023 Summit

Françoise Meunier, founder of Ending Discrimination against Cancer Survivors, speaking in 2023.

 
Addressing All the Needs of Cancer Patients and Survivors

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':

  • Physical needs
  • Psycho-social needs

 

Landmark Report Outlining Key Recommendations

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The Network has compiled a landmark report outlining seven priorities to help cancer patients and survivors achieve a life truly free of the disease  and its often under-appreciated impacts:

  1. Act on cancer distress
  2. Elevate pain management priorities within the cancer patient pathway
  3. Recognise sexual activity in health system approaches.
  4. Address cancer comorbidities and complications
  5. Empowerment through better education and information.
  6. The right to reintegrate into the workplace
  7. The right for their cancer to be forgotten by financial service providers

 

Advocating a Beating Cancer Plan Covering All Bases of Cancer Survivorship and Quality of Life

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.

  • Read Matti Aapro’s full statement on the session  here.
  • Download European Cancer Organisation’s summary of the hearing  here

 

Leveraging All Opportunities to Advance Survivors’ Quality of Life 

Since 2021, our Network has widened and accelerated its activities to promote the key recommendations enclosed in its ‘Free From Cancer’ consensus advocacy document. towards advancing cancer survivors’ quality of life through available opportunities. This has included: 

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Promoting Key Rights of Cancer Patients and Survivors 
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The Network is aligned with the European Code of Cancer Practice, produced by a team of cancer patients, patient advocates and cancer professionals, and launched in October 2020. It sets out a series of 10 key overarching rights, and in particular signposts what patients should expect from their health system to achieve the best possible outcomes.

Background

The battle against cancer is wide-ranging and must include:

  • A strong fight against the discrimination that too many cancer patients and survivors encounter; and
  • A relentless focus on addressing the many quality of life issues associated with life after a cancer diagnosis.

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.

To learn more or to support our work, please contact us here.

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