Quote:
Originally Posted by paula_w
Forget how to spell that expression.
PD Engineer,
Your outstanding programs and cutting edge choices are becoming the status quo at UAB, and now it's acquiring partners who each provide a role? Would that be right? And it actually gets all the way to the patient. Extending its rescuing tentacles out into the actual patient community. Last part inspired by Aj's head multiplying creature....lol
You are creating new standards of excellence. Go go go.
paula
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This is just a "brainstorm" so help me think it through. NPF has its TULIPS program, which provides training for and then recognizes facilities (I think it's limited to nursing homes/long-term care facilities) that are supposed to know how to treat Parkies.
What if we were to come up with two lists of criteria (one for research, one for care) that showed commitment to involving patients or serving the needs of patients, as determined by patients. Sort of like a "union label" (remember the commercials? Look for the union label!)
Assuming that we could put those criteria together, it has carrot-and-stick potential. If anyone qualified, we could give them a certificate and do a press conference. If we were so inclined, we could have a media field day by sharing a list or report card of which orgs/projects DIDN"T qualify (that is always tricky and not a good first move).
We could launch this effort in April for PD Awareness Month. (In my opinion, that month shouldn't be devoted solely to telling people is, but about what people with PD want and need).
I just woke up an hour ago so these suggestions aren't being filtered all that well, but I wanted to throw them out there before i lost them!
Off to Atlanta tonight for YOPN (we're going a couple of days early) Hope to see many of you there and continue these conversations.
JHC