Networking for the benefit of cancer patients

Unfortunately, rare cancers are not so rare. Today 24% of people living with cancer in Europe have a rare cancer, which equals 4.3 million people on our continent alone. What is more, rare cancer patients have poorer prognoses and worse outcomes than patients suffering from more common cancers. This is partly due to inequalities in the way healthcare systems are set up. But it is also because it is difficult for healthcare professionals to build expertise in a certain cancer type, when they only see a handful of patients of that type in a year. How to keep up with all the developments? How to exchange knowledge between oncologists, patient advocates, and policymakers in a quick and efficient way?

The European Commission is currently spearheading two initiatives with the aim of improving care and ameliorating outcomes for rare cancer patients. On November 7th European Commissioner for Health Vytenis Andriukaitis formally marked the launch of the EU Joint Action on Rare Cancers (JARC).  JARC is a new collaboration between the European Commission and 18 EU Member States aiming to bring together knowledge and fragmented resources in order to maximise synergies and results for rare cancer patients and EU healthcare systems. JARC will do that in several ways, including by:

  • Building tools to help us better understand the epidemiology of rare cancers, and therefore better plan systems and place resources to fight them.
  • Compounding, assessing and communicating clinical guidelines for rare cancers, so that healthcare professionals can have easier and faster access to state-of-the art information.
  • Establishing frameworks for improving access to much-needed innovation.
  • And by devoting a chapter on better policy-making in the field of rare cancers.

This effort goes hand-in-hand with the European Reference Networks (ERNs). The ERNs aspire to serve as a medium and as an amplifier. As a medium, because they will transfer knowledge and patients between hospitals with considerable experience in a certain rare cancer to others that are on the way to building that level of expertise. And as an amplifier, because they will help connect the centres of expertise of different European countries between each other, thus accelerating the adoption of best practices. The European Commission will soon be announcing the final list of ERNs and there is expectation that some of these networks will be dedicated to rare cancers. We all know that networking of this sort is important. For example, it is estimated that one third of all cases of soft tissue sarcomas, a group of rare tumours of more than 50 histologic subtypes, are misdiagnosed. More networking could mean more questions asked to experts, more correct diagnosis, more sarcoma patients getting the right care and treatment for them, therefore better chances of surviving their disease.

A lot of work has been undertaken in the rare cancers policy space - but collaboration has so far been informal. One example has been Rare Cancers Europe (RCE) , a multi-stakeholder partnership of organisations that work together to place the issue of rare cancers firmly on the European policy agenda and to promote solutions on rare cancer challenges. Lilly has been a member of Rare Cancers Europe and we are proud of the strides it has made. Now is the time to formalise and build on these efforts through initiatives like the EU Joint Action on Rare Cancers and the European Reference Networks.

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