Why care about Science.
Chances to survive Melanoma depend on Science.
In 2011, the year the first new Melanoma therapy was approved, about 5% of all patients with Advanced (Stage 4) Melanoma were still alive after 5 years. Today, about 10 years later, over 50% of all patients are (REF).
The progress is remarkable but it also means that current therapies only work for half of all Advanced Melanoma patients in the long run. The other half- those whom even the new therapies fail- are most likely to receive some form of experimental treatment.
'Experimental treatment' might sound like the very last thing one wants to hear when having to deal with advanced cancer. Except for the alternative.... It is worth remembering that not everyone who joined a clinical trial in the last 15 years survived. But those who did survive all had some type of experimental treatment- as it was the only way to access anything with a chance to work.
Experimental treatments are not created equal. The degree of 'experimental' can vary considerably, from 'never tested in humans before' to 'highly likely to work'. Knowing how to chose and to navigate the system is therefore a valuable skill.
as a patient
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.
as a patient advocate
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.