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9/52 Zero Melanoma: mission-driven advocacy- the MPNE framework in a nutshell

MPNE, the Melanoma Patient Network Europe, works according to an approach that is similar to the one in mission-driven innovation as proposed by Vinnova, Sweden's innovation agency, described here or that laid the basis for the EU Cancer mission.

However, while most mission-driven innovation actions are thought of and organised as projects, MPNE runs projects within a mission-driven framework.

This is different from how others work- as a matter of fact, we haven't come across any other patient organisation working like us. It requires a different type of prioritisation and resource allocation- something that might not be obvious at first sight. Therefore,

The MPNE framework in a nutshell

Starting with the end in mind. Zero Melanoma is a helpful concept in that respect. While we are unfortunately unlikely to ever reach it in reality, it is a very useful way to focus one's thinking: What would it take to eliminate the suffering from Melanoma?

Using an ontological approach- this will be the content of another blog- it becomes quickly evident that Zero Melanoma requires effective action across the entire spectrum of prevention, early detection, diagnostic and treatment as well as quality of life and survivorship. Which you might re-discover in the Cancer Mission here.

Fail in one area and fail to arrive at Zero.

Understanding the problems. Jumping to conclusions about solutions without having understood the original problem is a typical reason why projects fail. That is why we use tools like patient pathways and the person I worry about to understand where issues in the patient pathway arise and how they impact our community. Different issues arise are different time-points and they impact people's lives in different ways. All together, we often refer to this as our 'problem space'.

Understanding the solutions. As we are a patient community, our focus is on the issues that affect patients as these are the areas where we have most insights (this is the reason why MPNE does not focus on prevention- prevention targets the general population. Once you have been diagnosed with Melanoma, prevention is not what will help you). Our most valuable resources are the insights and the enormous range of expertise in our community. Diversity is always claimed to be the key to innovation and fresh insights- and if there is something we got: it will be diversity (and motivation!!).

Prioritise solutions, not problems. Conceptually, most people find this the hardest bit. It might seem obvious to focus all resources on a single Melanoma problem and work through one problem after the other. How this usually works is that the loudest and most dominant person decides what that most important Melanoma problem is supposed to be. It forces to choose between equally important problems, causing consistent resentment and alienation. And, a large part of the group just drops off- it's not what they really care about, anyway. That approach is neither fair nor particularly effective- it ignores the interests and talents of a large group of people. It's also not the smartest way to get better fast- worth reading up on 'parallel innovation' here. It's also terribly slow and not particularly fun.

So what do we instead? Knowing that there isn't one single most important Melanoma problem and that we have a diverse community with diverse insights, interests and talents, we focus on finding ways that allow anyone who cares about a problem to be as effective as possible at solving it- whatever that problem might be. We cannot- besides, why would we anyway?!!- tell anyone what to care about. But we can make sure that people who care and are motivated have the necessary knowledge and tools and networks- and for support, a community who wants to see them succeed. There are enough problems for everyone- and this approach allows us to move ahead on frequent and rare Melanomas, late and early Melanoma, different countries and different regions- all at the same time. All it takes? People who care and who are willing enough to put in the necessary work.

So instead of trying to find that one most important problem to solve- we try to find the one most important skill or tool or thing that will make our entire community better at solving their respective problems. Like- the 3 pillars of successful patient advocacy (disease- systems and skills/tools) on which all our educational programs are based. The MPNE principles (1. patients first 2. solutions, not problems 3. data, not opinions 4. if you don't do it, no one will)- as an aid for decision-making and the essence of this approach .

More focused maybe- V2A2- a tool to evaluate the quality of patient information material. And an educational tool to improve the quality of what you get sent in the first place... The Reading Scientific Papers training at all our annual MPNE conferences. There is more, we have been at this for a while, haven't we :)

It's not so difficult, really- stop wasting energy on fighting about whose problem is bigger, just focus on making everyone around succeed. Easy enough, no?

MPNE hubs are 'double agents'. So we all have topics we deeply care about- something that has happened to us, something that we found so unacceptable that we decided to take action, something where we have some professional insights, something where we have an idea how to change it- that will determine our concrete Melanoma advocacy activities, our own 'favourite' problems and what we decide to spend our own personal time on.

But then, there is also our community. Some of us run patient forums. Some make sure our IT tools work. Some teach design-thinking. Economics. Science. Some make sure everyone at our meetings feels welcome. Some make sure we are GDPR-compliant. Some sort logistics. And make sure everyone gets breakfast. Some negotiate better prices. Some are experts in trial design. Or diagnostics. And these are the things that make all of us better.

So we all work both on our own personal interests AND contribute our part to the overall community.

Because, in the end, for Zero Melanoma: we all need to succeed.

p.s. and the hard truth is the following. When you go into patient advocacy, one thing that you will get for free is unsolicited advice- everyone has an opinion on what you- in your free time, unpaid- should be doing. People just love to dump their opinions, then flatter off- just to check back in a year's time on how far you've come?! (that's btw the motivation for principle No4)

However, patient advocacy is largely about system change and any system change is hard. It takes an enormous amount of effort, willingness to learn, persistence over extended periods of time, self-discipline and resilience to make progress. And this is the reason why things only move in areas where someone truly cares. We can all talk about priorities as much as we like- but in the end, it takes a person willing to put in the necessary work. Things change because people care about seeing them changed.

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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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