The Melanoma Patient Network Europe is an open network system using self-organising principles. This makes sure that together, we improve the situation for as many Melanoma patients and families as possible- wherever they are.
Many of you have challenged us over the years to document how we work. Apart from the fact that writing is astonishingly time-consuming, MPNE's most important property is probably that it is evolving. So there simply is no masterplan based on which it is built. Which doesn't mean it is random. Far from it, as a matter of fact.
We have found 6 components or 'ingredients' that we in MPNE core believe define us as a network. These components obviously don't exist in isolation, it is the mix that matters. Here, we are also mainly thinking of the part of the overall network of Melanoma patients and carers (family members of friends who support a Melanoma patient). But we are obviously also connected to many others- within and outside the cancer patient community but also with other stakeholders with interest in Melanoma or those working on topics that affect us.
This is a first version, so if you think we've forgotten something, please reach out and let us know!
as it says in our name, we are a network of people. We think what is special about our network is that it's not an address book or a closed club but that anyone in Melanoma who is interested and agrees to our principles is free to join. This is a group of people who want to see things in Melanoma improve, for themselves but also for others- and who are willing to learn and work for that. And there's enough work for everyone! We aren't exclusive either, we encourage people to connect broadly with others, inside and outside Melanoma. Inside and outside their countries and regions. We don't track let alone feel like we own people, as a matter of fact, we can't even tell you how many are actually connected via our network at large!
However, that doesn't mean things are random. We use the knowledge about the architecture of our network to inform our programs and how we work- you will be familiar with nodes, hubs and core network members. That's also how we manage to get scientific and medical information accurately across language barriers. The entire hubs concept is build on the idea that by supporting those who support others we can keep many, many more safe than trying it to do it alone.
In short, it's not about control. It's about connection.
Spaces to meet
if COVID has shown us something, then it will be how important in-person meetings are. While the incidence of Melanoma is rising, it thankfully isn't such a frequent cancer, in particular not in the advanced setting. However that means that IF you are unlucky enough to get it, it's unlikely you'll have ever met anyone like yourself!
Unless you of course attend e.g. an event like the annual MPNE conference where suddenly everyone is in the same situation. We are very much aware of people missing these meetings, so we are doing our best to get them back...we know Melanoma doesn't care about COVID.
Our meetings always are a group effort- organised by us for us. By splitting work over many, the work load for every person remains manageable. Plus everyone gets to do what they are good at and what they like doing. And, it's definitely more fun to work that way.
All our meetings are closed and upon application only. That's because they are for our community, not for people trying to sell something. Or looking for study objects (we unfortunately have had that in the past). That doesn't mean that only Melanoma patients and carers attend. We regularly have other stakeholders present- healthcare decision makers, researchers, clinicians, companies, start-ups- who just as us spend their free weekends and often contribute with talks and workshops. For that reason, nearly all our meetings run under Chatham House rules (and that's the reason we usually don't record or live-stream). We want respect for ourselves- and that's what we owe all our guests, too. As a rule, we offer faculty to attend as much of the meetings as they like- and to continue discussions over dinner. By now, we got the reputation of being a challenging but constructive and friendly lot- something we are proud of.
The way we think about ourselves
While our community is open, it is self-selecting for motivated individuals who want to make a difference. Depending on interest, that difference can take many forms but it always involves some form of learning and willingness to try new things. We believe that anyone can learn- it's just a matter of finding the right teaching style.
It is probably therefore not a coincidence that in our community, with a focus on proactivity and learning, most of us are either directly or indirectly affected by advanced Melanoma (Stage 3 and Stage 4).
While Melanoma is without doubt one of the worst things that has happened to any of us, we don't see ourselves as victims. Bad luck- most definitely. Victims- no.
We also know that Melanoma provides us with a different perspective and insights into the disease and our healthcare systems, things we didn't know before. Some things you have to experience yourself to see them- so we know that if we don't speak up, then no one will. This means both an opportunity- and a responsibility.
We therefore don't use the term 'patient empowerment'- someone else more or less gracefully ceding well-defined proportions of power to patients.
Instead, we use the concept of 'agency'- individuals increasing their personal range of options and ability to make decisions, to the degree they are comfortable with. And are willing to invest the necessary learning and to assume the associated responsibility that comes with it.
The way we think about how we work
We have a set of principles according to which we work- the MPNE principles. They developed over time and are the results of discussions 'how we do things around here'.
1. Patients first.
3. Data, not Opinions.
4. If you don't do it- no one will.
While they might look simple at first sight, these principles cover the essence of how we work- focused on what patients need, constructive, evidence-based and pro-active. While one might rightfully summarise it under principle 2 'solutions, not problems', something we have found to be extremely important was to have an approach that allowed us to try new things and rapidly learn whether they were working or not while not falling prey to limiting believes. 'Patient advocacy' is not a clearly defined, let alone legally protected term. That does not mean that people don't have clear expectations of what patient advocacy 'should' do- such as fundraise, emotionally support, tell stories, comment on topics considered appropriate, answer questions. As well as what it should NOT do, such as direct funding, educate its community scientifically, generate data, comment on topics it considers relevant, ask difficult questions.
At the same time, we noted the repeated pattern (also in ourselves) that people would enter patient advocacy with a very clear understanding of the impact of a problem, but with limited understanding of the cause of the problem and only a single idea about how to solve it. They would try, not succeed according to their own expectations and then leave, discouraged with the problem remaining unsolved.
We wanted to find a way that would allow people to keep their eyes on what they often had experienced themselves, the very impact of a problem, while being free to learn and explore possible solutions without being hampered by external or internal limiting believes. We started in 2017, with borrowing and adapting principles from the 'Lean start-up thinking' and are now working on methodology for a patient-centric research strategy along similar lines.
In patient advocacy, it is tempting to be reactive as one is approached with a continuous stream of outside expectations- which might or might not be in patients' best interests. Working principle-based provides a helpful first guide whether one is 'on track'- or on a diversion. And combined with being part of a community where testing new things is encouraged and celebrated- and some failure expected and the learnings welcomed- everyone who wants to grow grows fast.
Our main resources are education, tools and methodology and access to a large, diverse and motivated network of people and their knowledge.
We have developed an educational strategy for MPNE that we will describe separately.
In brief, our educational strategy
takes into account that we have different parts of our network with different interests- nodes, hubs and cores-
covers the three pillars of effective patient advocacy- Melanoma, systems knowledge and skills-
allows continuous onboarding and development with a 'starter to expert' approach
is respectful of an adult learning style and uses a mixture of different methods from close-to-daily small-sized information, weekly topics and conference coverages to deep-dives on particular topics.
Tools can be actual tools in the sense of online communication and collaboration tools such as slack, miro, trello and others but also models for effective advocacy, such as 'patient involvement in clinical trial design', 'definition of patient advocacy', '3 pillars of effective patient advocacy' and proximity/ scale model for impact (we will add them to the resource section).
Mentorship and support play a role on various levels. For every event, participants are asked to submit their particular interests that we attempt to address as completely as possible within our outside the event. We continuously explore different formats like dinner seating, the advocacy speed-dating session but also personal recommendations to ensure that anyone who is interested gets the support they desire.
We realised very early on that Melanoma actually wasn't one problem but rather an entire group of very different problems. We also realised that if we tried to prioritise and to chose one problem over another to work on, we nearly always ended with unacceptable decisions. How does one compare the situation of Melanoma patients in different countries? Or between different stages of Melanoma? Or between different types of Melanoma?
We also realised that whatever we decided, the majority of people was upset because the problem they considered most relevant wasn't selected. And we also noted that it was only ever a few who worked on a problem as there either wasn't enough work or not the right type of work for everyone. This basically left everyone frustrated: some resented they were the only ones working, the others that they couldn't contribute.
That was the moment we realised that what we had considered the problem was actually the solution to our challenge: we were many who cared about Melanoma, all with very different skills and very different interests. And we had many Melanoma problems that required very different people with very different skills to take care of them.
Since then, all in MPNE is about scalability. We don't only teach content but also how to learn- so that people can start learning by themselves as fast as possible. As we always have new people joining, we have an educational strategy from starter to expert. And it's not only about Melanoma but also systems and advocacy skills and tools. We continuously test new methods and techniques- and then, try to distill the essence out off it so that anyone who wants can take it and run with it. Our MPNE principles are a decision-aid for working smarter, V2A2 encodes how to generate patient information that is enabling, accessible and respectful and with that reflects how we think of ourselves and patients in general.
We use our networks to help people find like-minded others, information and resources. What we don't do is to do the work for them, to the point that the answer to any 'wouldn't it be a good idea' has become 'you got the job!' and the 4th of our MPNE principles.
We encourage people to share their projects, learnings, successes on forums, the poster competitions at our conferences and the advocacy sessions. We probably could do better as it never seems enough. And there seems to be an overall reluctance to *talking about things* rather than *doing them*. Which probably is good and bad, at the same time.
But the network works. Colleagues reach out for help and ideas and support each other. We benefit from specific professional expertise. And we have all understood- the fastest way to solve Melanoma is to make everyone as successful as possible in solving the Melanoma problem they care about while not doing the work instead of them. And allow others to tackle other Melanoma problems.
It is worth noting that MPNE evolved with the changing needs of the European Melanoma community. We started with access to clinical trials, fairer trial designs and drug approval, moved into HTA (Health Technology Assessment), pharmaco- economics and then, guidelines and drug utilisation. While at the same time broadening into rare forms of Melanoma and as treatments moved earlier, earlier stages of disease.
When we started MPNE in 2013, many countries had no national Melanoma communities and we still lost the majority of our people with advanced disease. Thankfully, both have changed. Many European Melanoma patients have now Melanoma groups in their own language with local expertise about their healthcare systems and local support systems and we are certain that there are more to come.
And a growing number of long-term survivors have become the backbone of our community, allowing us to develop deeper and broader expertise. Which we will need as we still loose too many of us.
version 1.0 5th Jan 2022 BR