Science for Melanoma patients
We as Melanoma Patient Network Europe make research accessible and actionable for any Melanoma patient who is interested to learn.
In our experience, patients who understand Melanoma, available treatment options and the latest scientific developments not only deal better with their disease, but are also able to spot fake news, develop better relationships with their medical team and know how to chose those clinical trials and treatments most likely to benefit them.
Melanoma patient advocates with a solid scientific understanding are becoming sought-after research partners, especially by consortia who actively seek constructive and candid feed-back.
As a network, we are constantly evolving our understanding and methodology about research priorities, relevant technologies such as NGS (Next Generation Sequencing) and Liquid Biopsies, research conduct and effective translation from research findings into clinical practice.
So how does this work?
We as community believe that anyone can learn- and that despite Melanoma being a serious topic, learning should be fun. Many of us are scientifically, albeit not necessarily medically, trained. We often learn together and discuss a lot- and not only among us.
We routinely invite experts from fields that matter to us- e.g. research, data, decision- makers, statistics- to explain their work to us. We've been fortunate to discover many teaching talents that way!
And as we know that many patients have to learn very fast, we continuously improve our methods. We see learning as a 'smörgåsbord' (Swedish buffet)- there is something for everyone and you take as much or as little as you please.
The following sections will give an overview, we plan to elaborate on the details in future blogs.
The fundamental rule
If we had to name ONE thing that explains MPNE, then it would be this one:
Every scientific and medical statement needs to be referenced to the source.
It doesn't matter what the source is- a scientific article, something you picked up in a newsletter or the newspaper, an oncologist's or a neighbour's opinion- the point is that everyone should be able to understand the context and make up their own mind.
Why does this matter?
Treatments and with that, thankfully also outcomes in Melanoma have fundamentally changed in the last decade.
Finding scientific literature
In an ideal world, all research finding would be easily findable and accessible and presented in a readable format. In the real world, knowing where to look and how to search make all the difference.
Reading scientific articles
The research ecosystem