Europe’s cancer patients call for quality Patient Educational Material

DISCLAIMER: All opinions in this column reflect the views of the author(s), not of EURACTIV Media network.

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At the European Cancer Patient Coalition (ECPC), the annual European Week Against Cancer (25 – 31 May) is a crucial milestone in our calendar. It is an opportunity to make heard the voice of the 400 members that we represent as the largest umbrella cancer patients’ association, covering all 28 EU Member States as well as other European countries.

This year, ECPC is using the European Week Against Cancer to draw the attention of policymakers, healthcare stakeholders, patients and citizens to the importance of educational materials for cancer patients.

A cancer diagnosis is a terrifying and life-changing experience. In that moment, it can be very hard to know what to do or where to turn. Often, patients either confront a relative dearth of information, or conversely are snowed under by an avalanche of “Doctor Google’s” contradictory advice.

Access to reliable, comprehensive and readily available information is crucial. Patient education material continues to be crucial throughout the treatment and in the post-treatment phases of cancer and can also be very useful to encourage prevention and early detection, an important factor in cancer survival rates.

Quality educational material can also enable patient organisations to more effectively participate in the design of clinical trials, in research projects, and in scientific and /or regulatory ethics committees.

Although a vast amount of excellent material is already available, there is room for improvement, especially for rare cancers, where patients can face difficulties finding accurate and up-to-date information in their own language. The new EU Joint Action on Rare Cancers (JARC) will notably address patient educational material.

JARC is a crucial game changer for rare cancer patients in Europe as it aims to advance quality of care and research on rare cancers. ECPC is one of the patient organisations representing people with rare cancer.

Following a request from several rare cancer patient representatives, ECPC formally established a Working Group on Rare Cancers (WGRC) working in parallel with the JARC, which guarantees that a large number of rare cancer patient organisations are able to contribute to the JARC’s activities.

During the course of 2018, ECPC’s Working Group on Rare Cancers will work to identify the needs for educational tools and learning programmes of rare cancer patient communities.

Progress in this field is already being made, and recently a detailed Q&A on Merkel Cell Carcinoma – a rare and aggressive form of skin cancer – has been prepared and is now available on ECPC’s website, translated into eight EU languages.

Another good example of available material is that of the Make Sense Campaign. Established by the European Head and Neck Society and carried out in partnership with ECPC, the campaign aims to raise awareness about Head & Neck cancer but also provide support to patients and survivors.

Included on the campaign’s website is a wealth of information about the different cancers which can be found in the head and neck region, including concerning the risk factors, signs and symptoms, diagnosis, treatment, follow-up and Q&A.

Additionally, a Patient Guide on Survivorship has been created by the European Society for Medical Oncology and ECPC, in collaboration with the International Psycho-Oncology Society, to help cancer survivors in finding new pathways to a satisfactory and normal life.

It includes a checklist that cancer survivors can share with their healthcare team to quickly and easily ensure an optimal survivorship care plan based on rehabilitation, late effect and second cancer prevention, as well as a smooth return to work.

This tool is based on the rehabilitation and survivorship recommendations produced by the European Commission’s CanCon Joint Action on Cancer Control, and will facilitate and empower collaboration between patients and health professionals.

ECPC welcomes the Manifesto of April 2018 on “EU can help to heal cancer: Nobody to die of cancer in 20 years’ time” by the EPP Group of the European Parliament. The manifesto outlines many vital steps to help achieve this goal, including through prevention, early detection and screening, as well as by taking care of cancer survivors.

Current Commission initiatives in healthcare are also going in the right direction in terms of mindset, as they aim to place patients at the centre of the conversation. Indeed, in its Communication of 25 April 2018 on “enabling the digital transformation of health and care in the Digital Single Market”[1], the Commission itself highlights the importance of empowering citizens, given that “person-centred approaches to organising health and care can allow citizens to assume responsibility for their health, improve their well-being and the quality of care and contribute to sustainable health systems”.

Quality educational material is one step towards helping patients take ownership of their health.

More can therefore be done to ensure that those who are faced with a cancer diagnosis are not left in the dark. More can be done to make sure they know where to turn throughout their treatment and survivorship.

In an age in which information is at our fingertips, it is all the more important to ensure that quality information about things that really matter is also readily available. ECPC is committing to doing its part.

For this reason, we will focus on upcoming Working Group on Rare Cancers on the issue of patient educational material. We will present to our members what is already out there and what is needed, and exchange with them on their success and challenges in preparing educational materials and putting it at the disposal of patients they support. This type of best practice and knowledge sharing will help us to identify remaining gaps.

We call on all concerned stakeholders – from EU and national policymakers to industry players, healthcare professionals and patient advocates – to heed our message and join forces to help ensure that more and better patient educational material is made available across the EU, providing support to the millions of cancer patients in their time of need.


About the European Cancer Patient Coalition

The European Cancer Patient Coalition is the largest European cancer patients’ umbrella organization.

The European Cancer Patient Coalition is the voice of cancer patients in Europe. With over 400 members, ECPC is Europe’s largest umbrella cancer patients’ association, covering all 28 EU member states and many other European and non-European countries. The European Cancer Patient Coalition represents patients affected by all types of cancers, from the rarest to the most common.



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