top of page

8/52 Impact over control, better have skin in the game and as long as it works, we take it

Part of the series 'How MPNE works'

We have noted that even networks members who have been with us for a long time do not fully understand how MPNE actually works, here comes another attempt at explaining it.

Over the years, MPNE has developed its own, unique way of working. It is both adapted to MPNE's purpose- ending Melanoma- as well as to its specific community of volunteers most of whom are directly affected by the disease and who come from all over Europe.

Truth is that the network has grown organically, we always start with a problem that needs addressing and then, work backwards, with a lot of testing and learning- and in the end, we note THAT certain things work but don't necessarily understand WHY. As long as it works, we take it! And it then takes more time and thinking to explain that, so here we go for another round:

Most patient organisations work and grow like this

A small group of people starts as volunteers. The moment the workload becomes too high, positions are created and people hired. With more work, more people are needed, making successful funding/ fundraising the limiting factor for further growth. Due to limited funds, projects need to be prioritised. There is always more work considered important than can be done.

This model has critical disadvantages

1. with funding as the limiting factor, dependency on funders becomes a real danger, to the degree it limits the freedom of advocacy work. Independent fundraising is time-consuming and competes with time spent on advocacy work.

2. as a rule, non-profits can not pay well, hires are therefore often well-meaning people personally affected (with a very real risk of self-exploitation) or junior graduates with limited professional experience and without personal disease experience. Experienced people often leave for more lucrative positions, causing a constant brain-drain.

3. the separation of professional staff and the community can lead to disconnection, often products/ initiatives that then need to be 'sold' to the community, limiting uptake and reach. At the same time, capacity in the community is largely untapped.

4. the need to prioritise due to limited funds means having to choose between equally important issues, causing upset and disengagement in the parts of the community that feel neglected.

5. there are always a lot of people talking about what should be done but very few working on it.

What we therefore wanted for MPNE

- independence from funders in general, not compete with national organisations' fundraising

- impact for the Melanoma community, not busy-work

- address all the concerns of the community, using the resources of the community

- give something back to the people doing all the work

We therefore

- keep costs contained, this allow us to e.g. turn down projects that aren't of real use to our community and limits the time spent on fund-raising

- think scale at all times- we could not run 10 projects in 10 countries at parallel- but we can help the people running those projects to be as successful as possible. With that, we are no longer the limiting factor: whether we train 10, 12 or 15 people in HTA makes little difference to MPNE but can mean that organsiations of entire countries handles their HTA submissions more constructively. The number of countries is limited, so we will never have to train e.g. 500 people either. The capacities we need depend on the problems the Melanoma community is currently facing.

- think impact vs control at all times- we often run things as 'do one, teach one, talk about one'. We try something small where we as MPNE have full control but limited impact, we use the opportunity to understand in detail what matters, then turn that into a e.g. a tool like V2A2 or the MPNE principles and use that to teach to allow others to copy it. We should talk more about it also outside the Melanoma community as people keep telling us how valuable they found the work. So far, we haven't been particularly good at it, mostly, as we couldn't see the value for our own community and with that, it directly competes with activities that do deliver tangible value.

- let everything start with people- as a non-profit, everyone else has very clear opinions on what we should be doing. Often, it's nothing more than a personal opinion, problems aren't well-understood and the proposed solutions over-simplistic (that's why we started using Lean Advocacy btw), meaning people like to dump their advice and then, like to 'check-in how it's going'. This is why we have our You-got-the-job MPNE Principle No4: 'if you don't do it, no one will'. Not everything that sounds like a good idea is one, issues are always more complex than thought and take longer time to address than planned. And if it's so important, surely you will find a way to do something about. Principle No4 effectively ensures that we only spend time on topics that people consider so important that they are willing to invest considerable personal efforts into it- they have skin in the game. And the ownership means that people actually get credit for the work they do, and learn by doing it.

While MPNE can feel unfamiliar

- no one tells you what you should worry about or what you should do

- you are asked to build and use your own network, rather than relying on an organigram with 'official' chains of communication

- there is little fixed structure, people come and go

- our most valuable resource are people, not money

- we chose opportunistically within a strategic vision of Melanoma (zero Melanoma, what kills our people?) and principle-based (MPNE principles) rather than trying to prioritize the allocation of limited resources.

- we argue an awful lot, about how we understand problems, what we think the solutions need to look like and always, on how to get better at what we are doing. To the degree people come to us to argue about their problems with us :)

- a big part of MPNE's 'secret sauce' lies in its convening/ facilitating/ mediating role and soft factors as discussed with the Pentahelix model in Berlin, here some further thoughts on the 6 ingredients that we think make us successful at we do.

3rd June 2022 BR

26 views0 comments

Recent Posts

See All

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


bottom of page