alex3619
Senior Member
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It is a basic tenet of good communication, that one must understand the audience one is addressing. Simply getting up in public and addressing ‘the crowd’ in the hope that someone will a) understand you, b) find your communication to have validity and c) for that someone to be an individual capable usefully carrying one’s message forward is vainglorious. What happens at best is you speak to people who are just like you – this is fine for ‘rallying the troops’, but hopeless if one is looking to speak outside one’s own narrow sphere.
I think that is a very reasonable challenge – however it skirts around the fundamental problem that effective advocacy has to come from a consistent and well defined philosophical base. The first thing that PR people and marketers do when drawing up a campaign is set out what are the values of the person/business/organisation/person/product/idea they are seeking to promote/sell. The 300 plus posts on this thread alone demonstrates that there is very little in the way of any single core value – on which:
On the first point, the conclusion for that seems to be never to bother with internet responses except on a site that is highly specialized, like PR, because we have no way of identifying an audience composition adequately. I don't think that is a valid idea. As you can never be sure of a target audience online, especially on something topical, it does not follow that you should not respond online. In addition, many will respond no matter what you or I or anyone else says. I very much doubt any claim to a well characterized audience online, from a mass media site, is going to be valid - it would be interesting to see research on this, but my guess is that the audience will be highly variable and it will depend in part on search engines and how they record the topic. HIghly specialized websites are of course an exception to this.
On the second point, we do lack cohesive agendas in many comments, and from a pure PR perspective that might indeed present issues, but its not that simple. First, the nature of the community is such, that for the forseeable future, there is NOT going to be a single cohesive community. Thats one of the limitations we have to deal with. Wishing for it gets us nowhere.
That is not to say things can't be done to increase community cohesion. Two of my pending projects are about this. One of the things that I think will fail abysmally is anyone telling the community they can't do this, or can't do that. Anyone taking that line is setting themselves up to fail.
The next point is that single core values are a myth. Sure we can agree on very very general things. More research. Better medical treatment. A cure. After that we are fractured, for well documented historical reasons. My take on this is that any strategy proposed must work with a factured community, and not just wish things were better. We need to operate with existing limitations, not fight them, unless we can slowly move those limitations - which is not easy to do.
Now we did have one thing that could have created cohesiveness: XMRV. If the research had been substantiated, and successful treatment devised, the community would have come together with a singular focus. The same might happen for Rituximab, or something else not even on the radar. This would be serindipitous, and is not something we should count on - good if it happens, but until then we can't plan for it.
We have many agendas. Thats a reality. Wishing for something else is not realistic. Even if a few could be pursuaded to limit their focus, its not going to happen to the majority. There is simply no mechanism to do that - none that currently exists anyway. I do have thoughts along those lines, but they are very long term - possible more than a decade.
When I discuss focussed groups however, there is an implication: there has to be a tight focus on goals. Activity based groups, with a specific objective, will have focussed goals and plans if its done right. Thats the best that can be achieved in the short to medium term.
One last point: any agenda that creates a strictly limited focus, "core principles", given the complexity of the current situation, will in my opinion fall into a trap. Some of the advocacy organizations have that - and so they are better at what they do, but bad at what is not their core area. We don't want that universally.
Bye, Alex