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21/52 Why the x/52 blog series: the post that should have come first

After just posting on the MPNE forum, I realised that I actually never wrote a proper introduction to this blog series of x/52 on how MPNE works. In a way, my forum post captured most of it, so this is a slightly re-worked version of it:

'I know that most of you are here because they care about Melanoma and you might wonder what all these discussions that just don't seem to have anything to do with Melanoma have to do here.

MPNE is a community of people who are determined to make a difference in Melanoma. And we have realised very early on that it does not only matter what one does but above all, *how* one goes about certain things. As- one can be very busy without making any difference whatsoever and that is the one thing we want to avoid at all cost.

So behind nearly everything we do- how we organise conferences, how the network works, how we teach, whom we invite to our conferences, how we post- there actually has been some thinking and often animated discussion - sometimes over extended periods of time- behind it. Like on the topic why lists don't work.

We have made an art out of trying out new things, freely borrowing from Lean start-up thinking- so every meeting has something that we have never done before. We also reflect on meetings- it's called 'the good, the bad, the ugly' . On photos of the first conferences, you sometimes see me with a pile of cards- the first conferences, I noted down everything that went really well and anything that was dreadful and needed changing. Now, we do this online on slack.

Now, here comes the issue: While we know certain things work and others don't, most of that isn't written down. It's not only that we aren't particularly good at closures (though we definitely aren't and that despite repeated workshops and sessions on project management for advocates) but that it actually takes a surprising amount of time to reflect on what one has observed, tested, read, discussed, tested again and then, concluded. Often we just go with 'it works, who cares why'. Lots of things change with time as well, so one has to go back on it, too. All to say: IT'S UTTERLY PAINFUL.

But then, I've been approached now *many, many* times to write down how MPNE works. Because it does work and also, because it's unique in its way. And because others might be able to learn from it and help patients outside our Melanoma community, in the end, there are many dreadful diseases. And without writing it down, culture is very hard to share.

As there is no way I'm ever going to sit down to write down a book in one go- I am still having nightmares of writing up my PhD- I decided to break it down and instead, write a blog per week. To later re-work all of it and get it into one piece. To make sure it happens, it was my New Year's Resolution for 2022- so 52 this year. While writing this, I am behind but I have been catching up during my summer holidays ;-) and someone just volunteered to be my accountability buddy, so there is hope. It also took me some time to get started, it's not so easy to get the right subject length and to keep one's perfectionism under control- so consider it at the level of a somewhat refined first brain-dump.

So here it comes: these are my thoughts but you might see things differently, might have read other things. And then, there is a lot missing- I write on the topic that comes to my mind, also because that's faster and more fun than slogging through some to-do list- but we shouldn't miss things that were helpful to our community and that we should be sharing with others. So I'd appreciate your comments, thoughts, further material on the topics as well as things that you think we should add. In the end, I'd love to have something like a living collection that captures our thinking about our community and our work- for a difference in Melanoma and beyond. '

p.s. obviously, we also welcome thoughts, resources and comments from anyone outside our community, there is *always* more to learn.

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