With a chance to live in sight but still out of sure reach, patients need early access to innovative therapies combined with systematic learning.  

A critical factor in both is the understanding of which risk is acceptable and which benefits are desirable and how risks and benefits are weighed against each other. While patients carry the ultimate risk- both if therapies fail but also if they cannot access potentially life-saving therapies- risk/ benefit decisions are routinely made by non-patients. 

 

The aim of this conference is therefore to take a closer look at risk from a Melanoma patient's perspective, in particular in the context of new therapies. Which type of risk are Melanoma patients willing to accept for which type of benefit? 

As with any other stakeholder group, patient opinion cannot be expected to be a single value, but rather a continuum of opinions. In a workshop (Friday) with representatives from the EMA, we will therefore look into how this diversity of opinions can be accurately captured in Stage IV Melanoma. 

​​We will then see how other stakeholders evaluate the risk of innovative therapies to arrive at comprehensive understanding of risks associated with innovative therapies.

​

While today's Melanoma patients might be willing to accept a higher risk in return for earlier and wider access to promising therapies, this will require systematic gathering of data, both to mitigate risks- early problems need to be picked up and reacted upon promptly- and for a systematic learning process towards a cure. To see whether the use of Real World Data could be a way forward, we will be having a Focus group (Friday) and a Podium Discussion (Saturday) as part of the GetReal project.

 

And as we are the Melanoma Patient Network Europe, there will be plenty of opportunities to meet other European Melanoma patients and advocates, to catch up in real life with friends and to make new ones! 

In our interactive Friday workshops, you will learn more about Melanoma, what a good Mole check should look like and which type of psycho-social support would make all the the difference for our patients. Aim will not only be to acquire knowledge but also to summarise it in a format to share with our wider network afterwards, so you will get the opportunity to contribute to knowledge that matters for our community.

On Sunday, we will discuss what has happened since our last conference and the advocacy actions we will take forward in 2015/16.