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 its 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.
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.