Updated: Jul 31
Work in progress- some recent thinking.
'Arguing things through' is one of the most helpful activities any community can do. And as always, we like to have outsiders in the room arguing with us. Nothing quite like that to sharpen concepts! In recent months, we in MPNE have now had several discussions where people who were not centrally involved in network activities came to us with suggestions about how to run things.
We *knew* these suggestions wouldn't work for our community- mostly as we had tested them ourselves in the past, some of them repeatedly such as the one of keeping lists for different purposes described here. However, every single time, the challenge was to explain *why* certain things do not work. Turns out that testing something and failing is one thing. Knowing why it failed to learn from it and being able to explain it to someone else, quite something different.
Firstly, our community is not set up like a traditional patient organisation. The choice was deliberate- we wanted a structure allowing us to support Melanoma patients as effectively as possible and anything else follows from there. Our goal was always about making a difference in Melanoma, not about having an organisation or to represent anyone. Communities like ours face particular challenges: how to scale, how to work across language and cultural borders, how to work with a community where many are patients and all are volunteers, how to affect change in a system as complex as healthcare.
Today, there is quite a level of thought and detail in most of our activities- from the topology of our network over how we organise meetings to the way we teach. However, it would be incorrect to assume that we somehow designed our community on paper and built it 'from scratch'. In reality, the process feels very different. We are all here because we want to make a difference in Melanoma. Observing what is going on- people but also political developments- is thereby a really good starting point to find out what burdens people, what matters to them and which developments will affect us. Questions on patient forums are direct reflections of patient need and seeing what people find helpful tells you that something *is* working. Then, trying to understand why- and that's often surprisingly hard. However, there tends to be quite a large body of literature on any topic imaginable- from networks to how adults learn- where one can read and reflect and as we call it 'get some brain on it'. We then see whether the learnings allow us to get even better at what we do. If it doesn't work, we stop it. If it works, well, it's just about continuing.
So our network is organically grown, but not randomly so because we reinforce and build what helps us. Structures are deliberate and there to support us in what we care about most: making a difference in Melanoma- form follows function.