It started with a comment by Jean Mossman who was reflecting on her own advocacy experience. That was in 2012, so I do not recall the exact words but it was to the effect that one starts out helping individual patients and can see the difference one makes. Then comes the realisation that the same problems keep repeating themselves. So one goes upstream to solve that problem, just to find a similar issue there again. So one moves further and further upstream to get to the sources of problems. As processes become increasingly abstract and complex, one moves away from the concrete situation of the individual patient. And change happens at an incredibly slow pace, sometimes so slow that one wonders whether one is making any difference at all.
Jean at MPNE 2014 in Brussels
Most of us ended up in Melanoma patient advocacy because of a persona experience with Melanoma. Sometimes, there wasn't the help we wished we had received, so we sat out to provide that for the people coming after us. Often, we got help from people who didn't owe us anything and who hardly knew us. As we ourselves have experienced what type of difference that made, we see it now as our task to help others in need. So it's probably part defiance, part gratitude- and the realisation that if we don't do it, on one else will either.
I recently came across the following 4 Levels of Impact in an ASHOKA impact report on Social Entrepreneurship that reminded me of Jean's comment, the figure below comes from page 6 of the report:
There are direct parallels to how we as Melanoma Patient Network Europe developed.
Direct support We started with helping individual patients. We realised that we could only help so many patients and that it was never enough.
Scaling direct support We started helping those who helped patients- that is how MPNEhubs were born. Not only could we help more patients but we could also be more specific- different languages, different regions (MPNCEE, MPNE Nordics), different Melanoma subtypes (MPNErare), different stages
System change We rapidly realised that the only way to protect all patients from poorly designed and unethical trials was to change the way trials were designed and have followed that thinking since.
Frame change Probably rather an unintended consequence, our motivation was to have people survive Melanoma, not necessarily for others to think differently about us. However, this has happened.
However, I do not think that these are somehow evolutionary steps to impact one has to follow in that order (that is why I didn't number them). We started working on better trial designs- system change- before we had a fully formed MPNEhubs system- scaling of direct support. And frame change was never our intended aim- our aim remains to see more people survive Melanoma.
Also, during the MPNE hubs meeting at MPNE 2017, our annual conference, we mapped our advocacy activities and plotted them on a grid mapping directness of impact, so how close are you to where the impact is created, and the number of people you can affect with the activity. While it will be little surprising that direct patient support makes an enormous difference for the single individual but does not reach far beyond that person, it turned out that all of us had activities of a certain breadth, spanning across. There were however personal preferences for certain type of activities- some people e.g. heartily disliked activities involving public speaking, some felt they had the biggest impact educating.
The take home messages from our MPNEhubs workshop were:
As community, our activities span the full spectrum from direct impact/ limited reach to indirect impact/ large reach. This means that we are supporting patients directly as well as working on solving upstream problems- just not everyone all the time because as individuals, we fall into certain areas of that spectrum, depending on our personal talents and preferences. And critically, to make a real difference for patients, we have to keep the connectivity between patient reality and any abstract system change we tackle.
Update
After some further searching, I found a more extensive description of the Ashoka impact spectrum that actually highlights that these areas of impact are not to be considered hierarchical. You find the text here.