I agree with Carolyn - once you are entrenched and familiar with one site it is difficult to leave. Other forums have been tried; PAN has not been successful in their ventures. It doesn't surprise me that they don't show up here; I've looked there, but haven't participated because I like it here.

My beef with PLM is that they are funded in part by big pharma.

I think the object is to build a critical mass of patient voices that is useful for many purposes. It wouldn't be a new forum; those are already being well used. The goal is to do something different; find a way to harness the power of all of the patients using the internet in a way that doesn't disrupt current patterns of usage, but builds on them and enhances what is already available.

I like the concept behind Paula's proposal; researchers could contact us as a source for patients to recruit for studies; we could take patient surveys to determine unmet needs; we could start threads on already established forums to check the sense of the community on different topics. Like the thread we are using right now - it is a transparent look at an issue that concerns patients. The number of posters is not large, but the page views are enormous; it has sparked a lot of attention. If I was an org, I'd monitor it and try to learn from it. Differences of opinion and discussion are important.

"Database" is too narrow a term. Basically, I like the Foundation concept Rick proposed, but instead of starting from a purely scientific basis determined by researchers, we begin by collecting people who then would be in place to provide data the researchers might be looking for, or respond to surveys, or share stories, or read the latest news - the ultimate patient place.

Maybe the way to start, to drive patients to the site, would be Rick's idea of an initial survey to determine what patients think is important.

Bottom line is that it is patient run.