Peggy - I don't think you are out on a limb. I think we have to cooperate with all of the current players. The question is how do we play / how do we leverage our strength as a player?

No one has spoken to this part of my above post:

"I think the value of some sort of patient panel lies in its ability to articulate the needs of the orgs most important constituency. Our voice now is lost among all of the other power players. Although patient frustration is a negative emotion, it is what is motivating us to speak out. The result we seek, though, is positive action on all fronts from those who are already mobilized in our service - the organizations. I think it would be generally positive if patients who care about this and who are in a position to influence, start to have a conversation about what is possible"

In other words, would we have more power if we were consolidated along with serving as individuals holding positions on various advisory boards? We want the pharma investment, - how do we influence how the money gets spent? Right now it's spent on our behalf without our input.

Speaking to Todd's original question: what can the patients do to change the org culture from "me" to "we"?

One thing is becoming clear from the above - as individual patients, we are intimidated into compliance by the status quo. Is that really how it should be?