Perhaps those with connections to researchers could inquire how THEY think patient involvement could best be incorporated. They need this, because as we all know, PD is so different for everyone and probably no one drug is going to be "the" drug that fixes all PDers. They need the sub-set groups... in fact, now that I think about it, one neuro we went to insisted my husband get tested for the PARKK2 gene, told us he needed to know this because in his (we found out later, limited) experience with PD, inherited PD did not respond as well to the traditional meds as idiopathic PD. We did not know this...and this is the type of info. these research guys could use.

Plus, I agree with Chasmo, I can see terrible bog downs with the wrong kind of patient involvement, myself included...so some questions that, if addressed, might help bridge this chasm, are (IMHO):

-how can patients best help the researchers? ask THEM that, they surely cannot possibly respond that patients can be of no help whatsoever-in other words, there is SOMETHING or SOMEWAY we can help them, let them tell us what it is (doesnt' mean it'd have to be done, we just what to see what their idea(s) is/are on this issue)

-what kind of input, and in what format, could they best use?
(there is already some of this on patientslikeme.com, maybe something like that)

-could patients respond to some of the points raised in the upcoming online discussion we are currently excluded from? Maybe not in a live chat, as an active participant, but could we post questions that could be answered later, at perhaps a designated time? There are probably many folks who would pose similar questions, and they could be combined so as to be as efficient as possible.

There are others, but these are my main ones. I do think it would be interesting to hear from the researcher's directly how we could best help them. Perhaps it if were their idea...as the saying goes.