[jeanb]

quote from Carey:
"... Due to the very nature of any non-profit organization, the organization is beholden to their board and donors first, their client base second.

A truly independent patient voice will always be at odds with any one and/or all of the Parkinson's organizations."


Thanks, Carey

You have articulated the problem of being funded by a PD prg. When a patient group accepts funding from a PD organization, they naturally are beholden and accountable to the org. And in order to continue to receive funding, they need to keep on being accountable to the org that pays their way.

There is nothing inherently bad about that – it’s just the way things operate.

But that is why this patient-driven initiative (in whatever form it turns out to be) must remain independent and accountable to the patient voice only.

[pegleg]

Although this is posted individually in two other threads:

http://neurotalk.psychcentral.com/thread51499.html
http://neurotalk.psychcentral.com/thread51472.html

I want to be sure this gets exposure in this thread. Exposure of this caliber is what makes things happen (I think the most of the org sites picked up on it and gave even more exposure. And didn't everyonoe do a fabulous job who was allowed to speak?

If you will note the NY Times allows readers' voices to be heard on any topic. If we get our wants and needs organized, this would be a wonderful way to give it media coverage. And with Tom's "international" interest, we could probably even find moroe possibilities of this grassroots approach.

(and Hi, Tom!)

Peg

[Splanton]

One thing that is pretty useful is that once you have a search that works at least "OK" with one search engine, you can plug it into another search engine and run it for slightly different results (or, sometimes, greatly different results!). In the above, I had a simple Boolean search:



"patient advocacy" AND Parkinson* AND (2007 OR 2008)



This translates as:

1. Look for EITHER 2007 OR 2008 in all documents.



2. Look within these for the phrase (within the " ") "patient advocacy".



3. Look for a word beginning with the string: Parkinson , accept any ending for the string Parkinson (that's what the* does when hung at the end of the string), so we get "Parkinson", "Parkinson's", "Parkinsons", :Parkinsonism", etc. Now, maybe this would work OK without the *, but I tend to be ultra-conservative in writing searches, so I always try to do it this way...



In any event, the "patient advocacy" AND Parkinson* AND (2007 OR 2008) instructions can then be plugged directly into Google, Yahoo, etc., with a simple cut & paste "click"...
Stan

[paula_w]

When pwp and others donate to an organization, what do they expect for their donation? I see a lot of conference-attending, in beautiful places, with first class accommodations, gourmet dinners, and exorbitant fees.

Patients who attend [few as they are] are tolerated. While appreciative to have the opportunity to attend a few, I find that you can get caught up on the latest research pretty quickly. It's great for making contacts, but follow up isn't regular unless you have the funding to make it more so.

So that's just the way it is - the boards are in charge - and we need to struggle along without any money. Letting business get away with spending money that should go to consumers is the American way - so let's just all accept it and go home. We don't want to offend, so we'll just suffer and be happy with what we have.

Does anyone realize that there are just a few patients who are receiving "what we have"? Unless you have your own money. In return, the patients must.....help me out someone, and explain specifically how it improves our health.

That's just the way it is.

paula

[SherylJ]

Paula implied that the orgs spend too much on "conference-attending, in beautiful places, with first class accommodations, gourmet dinners, and exorbitant fees." That may be, but it is is a drop in the bucket compared to the funds wasted by duplicative expenses incurred by having so many national orgs (one of our initial issues).

"Letting business get away with spending money that should go to consumers is the American way - so let's just all accept it and go home. We don't want to offend, so we'll just suffer and be happy with what we have." wrote Paula

Personally, I don't worry about offending anyone if I believe what I have to say is true and needs to be brought to light to remedy a wrong. I suspect that most of the people on this thread feel the same way. We cannot afford to accept the status quo and hide in our homes until death comes to take us.

If anyone has objections to the way a specific org is spending their donations, I would hope they choose a different org as the charity of their choice. I would also recommend that if you stop supporting a particular org, you write a letter saying that and explaining your reasons. Money talks... even small amounts add up

What is our first step to turn all this talk into action?
sheryl

[paula_w]

Not too long ago, a group of pwps made a group You Tube video without leaving home. They emailed their segments to one person who put it together. I thought this was very effective. Is there someone who would be good at doing this and who would like to do it?

We have to communicate about this in a manner that is workable for all. Form the message and get it out.

paula

[grant r]

Originally Posted by paula_w

Not too long ago, a group of pwps made a group You Tube video without leaving home. They emailed their segments to one person who put it together. I thought this was very effective. Is there someone who would be good at doing this and who would like to do it?

We have to communicate about this in a manner that is workable for all. Form the message and get it out.

paula

I can get the editing done. It would be nice to control the raw footage quality, but we can do the first run as a "mock up" and see how it goes. It may be just fine, but I think a little "sheen" can set one apart. I do have access to pro gear and I have heard that one of the regulars on the other coast may be making a camera purchase soon. Perhaps we could do these at one of the meetings (too bad we missed Atlanta), if I can get my shooter there.

[paula_w]

6 million thank yous grant - one for each of the 1.5 million pwp quoted in the stats and one for all the others who could actually exist globally.

paula

[Perryc]

I want to clarify my message and respond to some of the comments and suggestions that have been raised.

First, Tom, I had intended to respond to your always relevant and insightful thoughts, but I ran out of functioning brain cells and forgot. I do like the idea of creating a PWP data base for advocates world wide. I would like to take this idea several more steps to further empower PWP by getting additional data on patients, and implementing personal health records and providing targeted individualized education and information, and otherwise provide information support to doctors and patients for patient centered health care.

"Patients like me" website has been written up in the NYTimes, and hailed as a new paradigm in the internet age by people I respect in health policy conferences at IOM (Institute of Medicine, National Academy of Sciences) that I attend regularly. When I have looked at the Patients Like Me site, I have been underwhelmed by the PD section. Am I missing something, or are my standards to high? I think we as PD advocate leaders can do a better job. It will take some resources and staff to do this correctly.

The original PPP concept included much of this activity, but with no resources, the concept has remained on the shelf. This to me is a high priority task and my intention is to focus energy and resources that I can muster on this topic. As always, I invite anyone with an interest to join the PPP to participate (www.pdpipeline.org). As I said previously, PPP is probably not the right vehicle for this effort, but it is available now.

I have some other interesting ideas cooking, so Tom let's talk on Skype to share and update each other. Also, thank you for anointing me as head of the family. I like power, but not for its own sake, rather for the ability it gives you to open doors and be listened to and heard. It helps to understand the situation, and to make consistently correct judgments, which I have been increasingly been able to do with help and coaching from my colleagues. While this PWP power should be viewed as an asset, it may also be a threat to some so I just become a bigger target (to borrow from another fairy tail) for those sitting in their castles saying "mirror, mirror on the wall, whose the most powerful of them all." The risk of a head in the bed would be my head.

(Tom, I am curious why you have used the godfather analogy and what I said to make you think I was disappointed)

In response to those of you who want to start a patient only organization with no money, the lessons learned from the PPP indicate to me that we need some money and full time, healthy staff that is responsive to PWP to manage the volunteers in order to accomplish multiple tasks simultaneously. From what I have heard from the grapevine, The PD organizations view this thread with alarm, because it challenges their moral authority to conduct research and speak on behalf of patients' interests. I think it is good challenge the complacence of the organizations, to take our concerns about the failures of science and regulators to confirm what we know from first hand experience in clinical trials to be true.

I want a unified voice for patients and a unified voice for PD organizations and will support any movement to create such an organization, if asked, with my experience and advice to those who want to form such an organization.

What I would rather see is the PD organizations collectively create this PWP council, recognize the value of the independence of PWP advocates and take direction from it, nurture it, sustain it, not control it for the sake of other constituencies, and reap the benefits for patients in the creativity and focus on real issues that results. This is kind of relationship that I want to set up for PPP with PDF

Perry

[reverett123]

...this thread with alarm. I certainly hope so for our sakes as well as theirs. In fact, I would like to speak directly to their reps for a minute-

We are no more YOUR enemy than you are OURS. It is not that we seek to damage you in any way, but we do want your attention. And we do want you to recognize that things are going to change and that we intend to be the main influence upon that change. PWP are different. We are the overachievers and we just might pull it off.

Of the orgs, some will see this as a threat and attempt to either ignore it or negate it. That will be unfortunate and cost both sides. However, one or more of you see this for what it is - an opportunity to make your own organization(s) stand out from the herd, accomplish something, get good PR, attract donors, etc.

There is new energy here. It may well dissipate as it has in the past. But it may take another course and end up on the cover of Time magazine. Wouldn't it be great if you were on there with us? Reach out and PM somebody. But only if you mean it. Don't patronize.