The MPNE approach to learning.
The information challenge
There has never been more information available than today and the shear volume of it makes it impossible to oversee.
Information gets distributed over interconnected networks, different media and social media channels and language barriers.
Most information is openly available and everyone can contribute, dramatically increasing the speed of the distribution.
Information is mostly communicated in condensed 'bite-sized' form, making context all-important for understanding.
Scientific information is always relative and needs to be understood in the context of its time and the limitations under which it was produced.
Until cancers like Melanoma have become curable, there will always be patients who are forced to rely on experimental treatments.
Not all experimental treatments are created equal and those providing information about them are often not neutral towards them.
Often, there is no single right answer as risk/ benefit assessments are context-dependent and personal. People decide differently when it is their own life at risk. And in front of the same situation, different people might take different personal decisions.
The stakes are high as Advanced Melanoma remains a life-threatening disease. Fake News can therefore kill. And knowing how to chose the most promising experimental treatment can buy additional time and also make the difference between surviving or not.
The solution that isn't a solution
Considering the nature of the challenge- distributed, open, real-time, high-volume, small information units, ambiguity, need for context and accuracy-
we believe that a single centralised authority or information clearing house is neither realistic nor desirable.
A distributed solution to a distributed challenge
Patients are the party with most 'skin in the game'- you will find a good book on the topic here. With most to lose, they are also those most interested in getting it right.
Our approach is therefore to teach Melanoma patients, carers and advocates how to find, read and understand the most reliable scientific information- and how to evaluate and discuss it in the community, with one's medical team and in any other setting.
There is no short-cut to knowledge. But there's help.
While everyone can learn, there unfortunately is no short-cut to knowledge and that's also true in Melanoma. But being part of a community helps!
In MPNE, we have developed a system how to help anyone getting started in Science:
it starts with the rule that on our forums, all posts that refer to medical or scientific information need to state where the information comes from. Was this a scientific article? A newspaper? Your oncologist said it? Knowing where information comes from allows to go back and verify it- and we teach you that, too.
At our annual conferences, we always start with introductory sessions about Melanoma, staging and all approved therapies. One of our most popular sessions is 'meet the scientist'- a 45 min where a scientist will share their latest results, in a format that allows everyone to follow because we add in necessary background information. We have even developed a very effective workshop format to teach you how to read scientific papers yourself, too.
We visit different types of scientific conferences together, smaller meetings that are great for those who have never attended a scientific meeting to get started and larger meetings like ESMO and ASCO for the latest scientific updates, information will be shared on our forums.
You can participate in scientific projects yourself- as community, we review trial protocols, publications and grants and we as MPNE are now participating in our 3rd Horizon 2020 project.
Scientific progress is gradual, not everything we thought was true, turns out to be true in the end. And personal preferences matter when it comes to making far-reaching decisions when evidence is limited.