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10/52 How to find the resources you need. And why you already have the tool. And it's not a list.

As a community on a mission to improve the chances to survive Melanoma and to minimise the impact of the disease on people and their families, we are constantly looking for resources.

Most often, people think of resources as money. However, we have noted that our most valuable resources are non-financial- it's about ideas & experiences, knowledge & skills and contacts.

It is clear that we as a large and diverse community possess that type of resources in spade- add motivation and persistence to the mix! Once in a while a discussion comes up that reveals some unease- 'surely, we should be able to better leverage all that knowledge and potential!' That is usually the point when someone make a list of some sort.

Now, lists- or databases as more sophisticated lists- are a great tool to help with certain type of problems. You are less likely to forget anything when using a shopping list. They are also not so great with other types of problems- such as the one of solving Melanoma.

And that's the reason for this blog.

Lists are great if you know the items to go on that list. Bread, apples and milk won't surprise on a weekly shopping list. Just, Melanoma isn't like weekly shopping- most of the time, it even isn't entirely clear what the exact problem is. (That is being sent shopping without knowing whether you are shopping for your weekly needs, a big surprise party of 100 people or maybe, to fix the flat tyre of your bike.) There are also many different types of problems and most of times, the solution is not clear. So, we don't really know what the items of that list should even be to start with.

Then, often we are not looking just for a single item, like for a packet of rice (sometimes we do- like 'the link to register' or 'that article about' but those are the easy ones. And that's why registration links tend to be pinned on top of the forum. And the import Melanoma articles on the MPNE trello...). However, most of the time, we are looking for things like 'has anyone seen/ noted this before?' 'have you found something that works?' 'I have this problem, any ideas what to do about it?' 'what does everyone around here think?'

Answers to that are often multi-layered 'I tried this, here you can read up on it, this is the person you should talk to, happy to introduce you' and complex 'I would try this' 'no, I've done that, bad idea, what about this?' where the answer just emerges in a discussion. Not the material lists are made to capture.

And of course, any list is only as good as it is up-to-date. There is always a lot of enthusiasm to create resources- and our community is great at sprints: we always get a lot done in short, intense bursts of work. And very little to keep them up-to-date- which is the continuous, regular activities- which we as community are particularly ineffective as it simple does no fit with people's lives. Which means that many lists are outdated the moment they were created. And the type of activity that it would require to keep any list up-to-date is the worst possible form of activity for our community.

So, while we might be able to create a list- the likelihood that that list has all we need for any circumstance we might find ourselves in- it is zero. The type of information is multi-layered and complex and with that poorly suited to be captured in lists. Plus, even if such a magic list existed- we wouldn't be able to maintain it.

So lists aren't the way to go. So what would be the way to go? The solution to our challenge is to recognise that our network is more than a community of people, it is also a phenomenal knowledge repository.

There are however a few things to keep in mind when it comes to networks and to how to best leverage the potential and the resources within.

Any network is made up of people and of connections. The MPNE community is not a random network because neither its people nor its connections are there by accident. It is defined by a shared purpose and culture and interactions within the network are based on trust.

people we are a self-selecting group of volunteers who want to make a difference in Melanoma. Everyone contributes what and how much or how little she or he wants. Life and circumstances change and people are here because they chose to (guilt is a useless motivator anyway). While we all might feel we are rather different from each other- and most definitely are more diverse than e.g. any other professional group you might belong to- let's not fool ourselves. We communicate in English that means everyone speaks English well enough to contribute and for must of us, it is not our native language. So maybe not surprisingly, the educational level in our community is excessively high. Most of us are academically trained (we check for that at every conference, as you know). That's one of the reasons why we are so careful not to claim representativeness.

Then, there is always also the argument that people who have the time to engage in volunteer work are privileged to start with: they have the time, the energy and the resources to do extra work without being paid. Also that is true.

What matters most however is the conclusions one draws from it. Our people are still dying from #Melanoma. If we as a group of people who have the resources to volunteer and who have spent years of our lives in academic and professional training- if we can't change things for the better, who ever will?

connections when thinking of networks, most think only of the people in the network. However, what a network can achieve depends not only on the people- but also on how these people are connected, the 'architecture' or 'topology' of the network. Certain types of network architectures are great to spread information fast. Others are good continuously improving a situation. Some are more stable than others. Some have inbuilt weaknesses. Some are great to come to totally novel ideas. The importance of network architectures is why we think of MPN nodes, hubs and cores. And why, over the years, we have tested and come up with activities that help us establish just those connections that we need most. Don't believe it? Backbone of our network are the MPNE hubs- and that will be a different blog as this is getting already way too long- but if you have attended any MPNE event- WorldCafé? Posters? Speed networking? Reading scientific papers? Dinner seating? Elevator intros? 'Tell us about your job'? Workshops? all help us build a network with an architecture that helps everyone to be as successful as possible at what they care about: doing something against #Melanoma.

So if you are looking for any type of information or wonder who might be able to help with something? The community knows. And the more you know about people in the community, the more you will be able to find. Most people aren't particularly good at recognising their own talents- they just take them for granted and think that well, everyone can do this, surely?! and only paying attention to people will tell you that.

A lot of information is not about directly knowing- but about knowing how to find out. Having a basic understanding of the underlying network structure- who is most likely to know- can speed things up enormously, too.

purpose and culture MPNE's purpose and culture are condensed in our MPNE principles.

  1. patients first

  2. solutions, not problems

  3. data, not opinions

  4. if you don't do it- no one will

There should be a separate blog on the MPNE principles but helas, I haven't written it yet ;). You will find the principles described in your MPNE principles brochure here though.

trust and last but not least, the network currency is trust. People will help patients because they are patients. They will also help you to help patients- if they trust you as a person, believe your intentions are genuine and will make a difference in Melanoma. Because if they really trust and like you, they might also tell you that your idea is really terrible. And that they already tried and failed with that in the past.... which saves you a lot of effort in the end. It is also very much in line with MPNE's culture on finding solutions, continuous testing and learning. The community wants people succeed at making a real difference in Melanoma- we are sick and tired of loosing people we care about to the disease. In the end, the community is self-regulating. It will support those whom it trusts to make a difference in Melanoma, in line with its intended purpose and culture.

Where does that leave us with those lists? Apart from not knowing what to list, how to list it nor how to maintain those lists- even if you had a list, you are unlikely to access any of the resources without having the trust of the person behind it....

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Rob @DIA Europe 2024

'I was recently fortunate to attend DIA Europe 2024. DIA is the Drugs Information Agency and is currently in its 60th year. Drug Information Association: The Global Network for Health Care Product Dev


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