It all started with the observation that the latest medical information on Melanoma was only available in English and was only accessible to those with considerable medical and scientific background knowledge.
In 2011, my husband was diagnosed with Stage 4 Melanoma without any pre-warning. The standard therapy at the time was still DTIC- chemotherapy- and widely known to be ineffective. The only hope for patients was to access experimental treatments in clinical trials. There were new treatments coming through that finally showed some efficacy, even already in early trials. However, there were still numerous old hopeless trials around and the designs of the trials with the promising new substances were horrendous- comparing substances that showed effect against DTIC. I dubbed DTIC 'the standard of desperation' as surely a therapy that gives you nothing but side effects and doesn't work should not be called a 'standard of care'. I also learned the term 'nocibo', specifying the same, back then.
So I found myself spending an increasing amount of time not only searching for clinical trials for my husband but also teaching on Melanoma patient forums anything I learned: how do you find a clinical trial? How do you know the substance is any good? How do you avoid clinical trial designs that are bad for you? How do you join, leave and sequence trials and combine them with other available treatments? It was an extremely brutal crash course in everything that is wrong with clinical trials today and has been my motivation for patient advocacy ever since.
However, the point for today was the observation that *if* you spoke English and *if* you understood the Science and rationale behind the clinical trial designs and *if* you knew how to access those trials- then your chances to survive Melanoma were so much greater than without and the injustice of that deeply annoyed me. All that knowledge unfortunately did not save my husband who died in 2012- but it bought us valuable time that in hindsight has not only made all the difference to the way he died but also to us as a family and how we continued afterwards.
After his death, the question that bugged me was whether it would be possible to accurately share the latest medical information across language boundaries in Europe so that more patients would get a chance to survive Melanoma.
I very rapidly learned that that was actually a combination of challenges- more like accurately share the latest medical information across language boundaries in Europe so that more patients would get a chance to survive Melanoma- that needed addressing, obviously in addition to being feasible for volunteers with a very limited budget.
Overcoming language boundaries in Europe
Europe has many language communities, many of which are small. At the time, we were the EU of the 28, with 24 official languages, 5 semi-official languages and about 60 minority languages. According to a Eurobarometer poll in 2012, 38% of the European population spoke English and a quarter could read an English newspaper. Below a figure I made at the time
I had also noted that things I had written on one forum suddenly re-appeared in very different places. In our search for information, we ourselves had signed up to basically anything called 'something with Melanoma' and had started 'meeting' the same people again in different online communities. Not everyone was everywhere but that wasn't necessary either- we shared relevant information across and if you knew your way around, that was a surprisingly effective way of communicating.
So the first step was therefore to simply be consistent in connecting people who spoke English in addition to their own language- we all had English-speakers in our communities- and who could then share information with their own communities in their own language. This would ensure that also people who did not speak English would gain access to that knowledge.
As that started to look like a network structure, I started to first think of and then for simplicity also name them as nodes and hubs. Nodes are Melanoma patients who are a part of their respective community and connect with people in their community- for simplicity of the illustration, those connections aren't drawn on the figure below. MPNE hubs are those who connect across communities and as we communicate in real time and in English, these are people who are at least bi-lingual, with one of the languages being English. Something that I have realised lately is that 'nodes' or 'hubs' are actually activities or behaviours, not persons. You become a hub because you behave like one, it's not something like a status or a position. As we were all volunteers and many of us were patients with advanced Melanoma many of whom unfortunately did not survive, redundancy was and remains critical. This is the reason why MPNE hubs events are always open for anyone who is interested and who fits the criteria of 1. being involved in their own community 2. having an interest to connect with others across Europe and beyond and 3. speaking English.
And it then became clear that connections and networks don't exist in a void. It takes effort and care to enable, facilitate and maintain connections, not only for the people who form the direct connection but for the network as an entity. As these are essential for our community, we call them MPNE 'cores'.
Core activities can be surprisingly mundane- organise conferences, reimburse travel costs, print badges, apply for funding, accounting-which is why the legal entity behind it is called MPNEsupport. Core activities however also include overall strategy, like how we ensure that information gets shared accurately, the content is continuously updated and that people are actually able to act on it (all to become topics of different blogs as this is already getting way too long).
something that I have come across only recently, this is from the book Change by Damon Centola, and also something that deserves some further reflection is that our network very much resembles one with what he describes as a network with 'wide bridges'- networks ideally suited for delivering change.