Updated: Jan 22
Finally out: HOW DOES MPNE WORK.
MPNE, the Melanoma Patient Network Europe is not a patient organisation in the classic sense of the term. Yes, we are all directly affected by Melanoma, either as patients or as family members or close friends of a Melanoma patient. I myself started MPNE after loosing my husband to Melanoma the year before. We are coming from many different countries- at our last annual conference before COVID, participants came from more than 20 different countries. However, our goal has never been to somehow be representative. We are a group of people who want a better future in Melanoma. For ourselves, for those close to us, for anyone affected by Melanoma. Sometimes, but not necessarily, in that order.
When my husband was diagnosed with Stage 4 Melanoma out of the blue, I could access and read scientific publications. I worked at university and then, I happened to be a physician who also happened to have a PhD in Biomedical Sciences, both of which came extremely handy because back then in 2011, everything in Melanoma was experimental. The only thing we knew with certainty was that the established therapies didn't work. And that it would take luck and knowledge for a chance of getting out alive. What actually got me into patient advocacy was the randomness of it all- what if I had studied something else? I started explaining Science and medicine on patient forums. And then, despite all efforts, luck was not on our side. That's when I decided that I might not to be able to organise luck, but education- that was something I could do.
It started with thinking about how to get medical information accurately across language barriers. It quickly became clear that this didn't work only for medical information but actually any type of knowledge. And that one could not only distribute but also collect information this way. We rapidly discovered we could alert each other about things that mattered- like rare side effects of the new drugs that we would finally be getting. Drug shortages in some areas. And that whatever type of expertise or insight one was after- there always seemed a way to get it. We started with pure experimentation and discovery 'oh, we can also do this' and then tried to get even better at the things that worked. And to be systematic about it. It took us more than 5 years- me joining the EU Cancer Mission Board to be precise- that we discovered we were actually using a mission-driven approach to solving Melanoma.
Missions are a great way of working- you don't even have to know you are on one for the concept to work. But you have to have something you really, really care about.
It also doesn't mean that all is great. We- and me in particular- are terrible at follow-up, in particular, when it comes to documenting how we thought about certain things, what we tried and why and how we moved on (we just continue what works and try to stop anything else as quickly as possible, really). Working with impatient, driven people is great. Just not so much...for documentation. Now, many of you have asked us time and time again and we do realise it matters. So, just in time for New Year's resolutions- 2022 will be the year!- we in MPNEcore have sat together and I tried to formul
ate what we think of as the critical ingredients that make us all MPNE and successful at what we do.
So THIS is our first version: if you are a network member and think we are missing something here, we expect to hear from you!
Happy 2022 everyone!