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Originally Posted by reverett123
How about an independent board of PWP who rate the organizations based on defined criteria and publicize the results annually and to the hilt? Maybe work in a sliding scale to recognize and encourage the process of change. And do it on a curve so that some group is always at 100% so that we don't alienate all of them.
Some criteria- Money raised. Overhead. Amnt to research. Ratio of the two. Some sort of innovation score. Pick the biggest venue each year and hold a press conference to announce the winner. Release the list and let the media figure out the losers.
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Rick - I've been thinking along these lines; I think we need an independent patient advisory board; one way to start is an alliance of patients who are serving on org boards now, combined with some who aren't. That way, the orgs could be informed. I serve on the PDF patient advisory board, and feel strongly that I represent all patients that can't be there with me.
We've had very frank conversations about org fractionalization with PDF; they acknowlege it, tried to fix it a few years ago (as Peg stated above), but don't feel able to fix it now, or want to put energy into fixing it. There seems to be some collaboration in the offing about some research dollars, and the PDF does spend time thinking about whether or not they are duplicating efforts done by the other orgs when considering new initiatives.
It's a tough problem; I don't think that most of the orgs know or think of the level of patient frustration that exists.